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Asperger's syndrome girls health story
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THE MIND

More Than Just 'Quirky'

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

 

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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 neuropsychologist at the Asperger Institute at the New York University Child Study Center. "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."

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  • Posted By: Elizabeth Hensley @ 01/21/2010 9:30:09 PM

    Seeknhelp lack of sleep is her biggest problem. I took a poll at an Autism support and celebration group I belong to. The ones of us who could sleep could function and work. The ones of us who could not sleep could not. That holds true for other conditions too. She is cranky, exhausted and distraught from lack of sleep. No one can function if they are severely asleep deprived all the time! What to do: Google MSG and learn the 40 different names the FDA allows this to hide under. Get her to stay off of it. It is a brain cell killing poison! Melatonin in VERY large doses before bedtime will help. I take 30 milligrams a night. That is too much according to the experts. Well the ???experts??? are not like us. Glutamate blockers may help. There used to be an antidepressant called Surmontil that did not lower REM sleep as most of them do now. The generic I had found is worthless and they took the brand name of the market alas. Avoid sleeping pills that lower REM sleep. Lack of REM sleep destroys mental health in the long run. Htp tryptophan can help. Some antidepressants can help sometimes but they can lower REM sleep too. Omega 3 can help improve the brain big time over a great deal of time. Our brains are made up of about 97 percent omega 3 fat. There is hardly any in the modern diet due to grain feeding all our meat Animals. B vitamins can help but should be taken in the morning. They can interfere with sleep if taken too close to bed time. Sometimes they have to be injected. Not as hard as you think. Some Autistic kids actually like B vitamin injections they make us feel so much better! Sometimes staying away from gluten and sometimes casein can help. Could she have allergies harming her sleep and giving her the kind of sleep apnea that will not show up in sleep clinics? Sometimes that can be a factor but not always. Asthma for instance does not always cause wheezing. There can be no other symptom that anyone else can tell but disturbed sleep. We respond to being looked at in the face as being threatened. She may be responding to People showing interest that way and it may be making her paranoid when folks try to help her. Looking back I realized I reacted in what would be considered a very rude manner to many Folks who showed interest in me and tried to help me for that reason. They were giving me the willies and I could not help it! We descendants of the Neanderthals react as every other Animal but Neurotypical Humans do to being stared at. Only Neurotypical Animals gaze compassionately at People's faces to show their compassion. That makes us feel just the opposite, like we are being attacked! So would a Dog or Cat! This is very unfortunate and is a big barricade to us responding well to therapy. We;d do better if Therapists sat next to us and looked at whatever we were looking at instead of across a desk from us.

  • Posted By: sandplover828 @ 07/09/2009 11:51:01 AM

    I am 16 years old, with an interest in writing, philosophy and performing, composing music.
    This is my 2nd day with the knowledge that I have Asperger's.
    I match over 15 symptoms, as well as many traits of NLD.

    All through my life up until 7th grade, I was a complete nerd, tight ponytail and glasses.
    But I starved to be normal socially, so much that it became an obsession that took place over academics.
    I got contacts, and started obsessing over my new hairstyle and clothes so much that I may as well been body-dysmorphic. I tried to hard to make friends and get out there, that even if I was careful about being reserved in my manner and appearance, some kids whispered that I was a slut.

    I journaled scrupulously about my social trials and errors.
    Over the years, I made many friendly acquaintances and became seemingly "self-actualized," but in the end can only count on one hand the number of ppl I can truly call best friends.

    I have told my parents multiple times that I felt so different from normal people in social interaction, but they only scoffed and told me I was crazy for believing this. But I wasn't convinced. So in the wee hours of the morning yesterday, I snuck downstairs and started researching. I was blown away when I saw that my personality echoed Asperger's and NLD to a T.

    I think I differ from most Aspies in that I have strengths in emotionally-driven subjects like literature, philosophy, and foreign languages, over the maths and sciences.
    I live in an extremly rigid household, so my Asperger's is likely ENVIRONMENTALLY INDUCED.
    I wish my parents would have believed me instead of going along with the traditional Asian belief that anything can be overcome through grit and stamina.

    It simply can't.
    I haven't told them, and don't plan to. On my own, I have handled my life up til now even without knowing I have Asperger's. I simply thought I was socially stupid, and idiot savant. So I self-improved. After 4 miserable years at the height of awkwardness I think I can get along better now, as normally as I can possibly. Asperger's doesn't have a cure, but self-efforts do work. I have never undergone a single session of psychotherapy, and don't plan to. I DON'T NEED IT. I have been my own psycologist.

  • Posted By: seeknhelp @ 06/28/2009 11:30:37 AM

    I have an 11 year old daughter. I have taken her to doctors and she participated in early intervention. Now i am doing research to try to help what i can go back to the doctors with and try to actually find out what is wrong with her. As a small child her speech was slow and at one point not talking at all, i was told she was just a little slower, so she went threw the speech therapy and has been in special education since she started school They diaganosed her with mmd ( mildy mental disable). As a smaller child she use to obsess over horse which i thought was just b/c she loved animals. She use to let other children pick on her and take things from her and would not react to it, as if she didn't understand what was going on. Thank goodness she had a wonderful teacher that cared about her and wouldn't let the other children do so and tried to help her stick up for herself. Flash foward to the present and she now thinks everyone is always mean to her and picking on her, which yes she is the only girl in class and has been since she started so she knows the kids since the beginning, i do believe that she gets picked on, but at times even at home she doesn't understand of someone playing with her or thinking we are teasing her. When she gets upset she will cry for a very long time... at times it can last for over an hour or longer. The therapist and school say she does suffer from depression, and yes i can see that also, but nothing has been done for her to help that. She has gained about 30 lbs in about a year, her i.q. though was diaganosed below average that is why they said mmd. At school they have the problems of getting her to calm down when she does cry, i also have that problem though. She has always been the type to fall asleep at a decent hour, but would wake up wee hours of the moning and stay up without taking a nap during the day. I want to help her so bad, but i don't want to be turned away without having maybe some direction to tell the doctors when i go back. If anyone could please help me and think that it does sound like she needs to be tested for Aspergers Syndrome or maybe something else please respond back to this. Thank you, a deperate parent .

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