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: 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 .

  • Posted By: cltncblondeeagle @ 12/14/2008 7:13:44 AM

    I am a 38 year old white woman with Aspenger's. I didn't get the news that I had it until March of this year. Looking back at my life I see that it was enviormentally enduced autism because I didn't have the chances to properly socialize with other children my age. I was in Special Education classes but I would be the only female in them. I was bully prey as well from kindergarden to the 12th grade. I did have on paying job but was fired from it. I got it with the help of my state's vocational rehabilitation department. They got frustrated with me which usually happend with ANY professonal that came across my path throughout my life and told me to file for disablity. I am sick and tired of hearing in a condesending tone that it is for your own good as if I am a child and NOT a 38 year old adult. I am also tired of the statement that I cant read people. Maybe I read people differently than others. What really hurt was one pyscharists telling me point blank to my face I am incapable of love. I want to take chances and make mistakes on my own with out having to follow my parents around everywhere like a damned puppy but I am not allowed to. If I voice my frustration with it I get told that maybe we (my parents) are maybe tired of buyin you food or paying your doctor bills which in turn makes me back down. I just want a life on my own terms but no one will let me. I want to know what it is like for my spirit to soar like the bald eagles I love so much here. I am tired of feeling like a caged bird. My father gets angry at me for living like a hermit but they have fixed it so there is NOTHING I can do about the hermtiing without upsetting the whole house. My American dream is to marry, be employed and have children but I was talked out of it by a pyscharist and what was worse was that my own mother agreed with her. It took a WEEK for me to find the courage in myself to tell my own mother how much that hurt me. I have been through twenty five years of pyschotherapy and I am now at I point I cant stand shrinks anymore because they try to become like a third parent to me. I hunger for love and acceptance but I feed it with food. I have been food addictied since childhood. I cant state my true feelings or fear whatever I say will be turned around and made to make me like a bad person.

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