posted March 18, 2009 11:30 PM         

Adults/Women With Asperger's - The Good and Bad

For those of us who have made it to adulthood, it can be very difficult to find valuable information on Asperger's and autism. Even more so for women - which is why I was glad to come across this article http://www.psychologytoday.com/articles/index.php?term=20061103-000002&page=1
in Psychology today. Although I have an issue with the title (The Girl With a Boy's Brain) , which refers to Simon Baron Cohen's theory that autism is essentially an "extreme male brain," the article does a very good job of profiling a woman with AS.

As a female with AS myself, I do NOT consider myself masculine in any sense, and I don't think that the description of the young woman in the article does either. While we may be more likely to systematize, I don't feel that necessarily makes us "male."

As a child, I had plenty of interest in playing princess, looking pretty, and all the "girl" things... I enjoyed playing with my tea sets and dolls - but in a less than typical way. Too often, it seems like people want to put people in a box - if you don't fall into the "girl" box, then you must fit into the "boy" box.

I think many women with AS fall somewhere in between. Like many other girls with AS, I was drawn to people, but I related to them in an unusual way. I would either make friends with children much older or much younger, or I would have more friends of the opposite sex than was typical. All this was a way of coping with my limitations - older kids were more mature, and typically more capable of patience (especially the girls who sometimes had tendencies to "mother" younger girls), or younger kids who were more equal in terms of emotional/social development. Having boys as friends was also easier than girls, because boys are more straight forward than girls - they say what they mean, and mean what they say. There was less in the way of "playground politics" with the male set.

As with the girl described in the article, I have always been very "feminine" - I enjoy wearing pretty dresses, makeup, and so forth. At one point, I dreamed of being a model. However, I can identify with the description given in the article -

"A clothing maven, she's fashionably put together in chunky jewelry and a black minidress with billowing sleeves. But she'd rather stay home with those cardboard pieces than dress up for a night out. She's pretty—slender and pale, with innocently round eyes and long brown hair—and yet she's never had a boyfriend. Though smart enough to have earned herself a spot in a top neuroscience program, she often gets lost in her own neighborhood. "

This was me for a lot of years.

Everything described in the article is dead on for me, except the part about "manufacturing emotions." I have never had that issue - while I can disconnect emotions at weird times, usually my emotions are on overdrive. I've always felt too much. I love deeply and hard. I long for connection. I feel failure deeply and keenly. This makes it particularly hard, as my disabilities often cause problems with this. Often times, I find myself obsessing over something, and compulsively talking. I know that it's causing issues, but I feel compelled to do it. I'm not even sure why. As it's said in the article -"There are so many situations where I'm talking to somebody and I can tell they've lost interest," she says. "A lot of times I'm not sure what I did."

I, too, have always "consistently had at least one close confidante" - although often this became way too intense. The problem with "one close confidante" - is that when that person fails you, gets sick of you, or hurts you, you have no one else. As a kid, this happened to me more than once with my "best friend" at the time. Humans are humans, and they make mistakes, have bad judgement, and simply just do stuff to hurt other humans. It's just in our nature.

This was the biggest hurdle for me - I would fall into deep depressions when my latest friendship would end. I would feel desolate and alone. I would get angry. I would rage. Why couldn't I keep a relationship? Why couldn't people like me/love me? Why did I struggle so? Why did I try so hard, only to be rejected?

As for a love of animals, this is certainly true of me and my family. My stepfather was obsessed with his pet cats. We always had a full menagerie, and it would seem sometime he loved them more than the people in his life. This worked, though, because my mother was just as into animals.

When I was young, my parents bought me a dog. I adored this dog - and before long, I was obsessed with the fear that I would lose her and she would die. I would lay in bed at night, praying over and and over again, that she would never die or that if she did, we would die at the same time and be buried next to each other. My father and I took her everywhere, and I didn't believe I could ever live without her...

When my father told me he was going to give her to some friends of the family who had been watching her for us, I freaked. Even though I had not seen her for months, I could not bear the idea that she would not be "with me" even if not physically. She had to be my dog - so my parents found a way for her to live with one of them, so she would always be around.

Miraculously, she lived into my adulthood - in excellent health. The vets were mystified. Then, one day, she just wasn't herself, and by the afternoon, she had dropped dead. I was absolutely torn apart - I sat for hours listening to "buddy" songs on the stereo, and crying because my best friend was gone.

posted March 18, 2009 11:32 PM         

Kiriana Cowansage can run complex neuroscience experiments and sketch beautiful portraits. She melts at the sight of an animal, but she balks at the concept of love. Such paradoxes define women with Asperger's syndrome.

By: Carlin Flora

"Don't step on that—it's not a rug!" warns Kiriana Cowansage. It's a 9,000-piece puzzle of the astrological heavens, half completed, which she's putting together on the floor of her brightly colored studio apartment in Manhattan's West Village.

Kiriana, a 24-year-old graduate student, is enamored of details. She's also easily absorbed: A week earlier, she worked on the puzzle for 10 straight hours, without pausing for so much as a sip of water. A clothing maven, she's fashionably put together in chunky jewelry and a black minidress with billowing sleeves. But she'd rather stay home with those cardboard pieces than dress up for a night out. She's pretty—slender and pale, with innocently round eyes and long brown hair—and yet she's never had a boyfriend. Though smart enough to have earned herself a spot in a top neuroscience program, she often gets lost in her own neighborhood.

Such perplexing contradictions are the hallmarks of Asperger's Syndrome (AS), with which Kiriana was diagnosed when she was 19. AS is a condition on the high-functioning end of the autism spectrum. Its sufferers are successful in many realms of life but tend to have obsessive interests. They have trouble reading people and connecting with them. And they can have faulty sensory processing systems that leave them confused in hectic or unfamiliar settings.

Kiriana fits the AS profile quite neatly. What makes her exceptional is her gender. While the overall prevalence of Asperger's is 20 to 25 per 10,000 children, it's much more common in boys than girls. We don't understand what causes autism and Asperger's, or why more boys have these syndromes than girls, but some scientists conceive of them as expressions of extreme "maleness"—a talent for systemizing as opposed to empathizing.

Other experts attribute some of the gender gap to the widespread misdiagnosis of girls. "Girls are pretty neglected," says Shana Nichols, who specializes in treating girls with AS. Most of what we know about the condition is based on research on boys; theories about how it manifests itself differently in girls stem mainly from anecdotal evidence. Researchers agree that girls with AS tend to be more anxious and less aggressive than the boys. And during their teenage years, they are at an increased risk for awkward sexual situations and even date rape because of their inability to interpret social cues and their tendency to take statements literally.

When Kiriana was 2, her mother, Melissa, an English teacher, thought she was gifted because of her verbal precocity and started a diary of her toddler's amusing comments such as, "A bee fell out of my mind. What's a mind?" But Kiriana had an aggressive streak that was less endearing. One entry notes how she "tried to find a picture in the encyclopedia of an animal attacking a person, chewing him, and leaving the bones." Another reads: "When not allowed to do something, she screams in a piercing falsetto."

When she was 4, Kiriana became infatuated with dinosaurs. It was merely the first in a long series of obsessions. Once every picture in The Wonderful World of Prehistoric Animals by William Egan Swinton was emblazoned in her mind, she moved on to poisonous insects, then reptiles—a phase her mother nurtured by sending her to a lizard-themed summer camp.

posted March 18, 2009 11:38 PM         

Since teachers are unlikely to flag kids who excel in written work no matter how quiet they are, many girls with AS are overlooked for special education, says Michael John Carley, director of GRASP, a supportive network for people with AS.

One teacher noted that "Kiriana had many problems learning the square dances and musical games. Changing direction or actions at musical cues appeared to be quite difficult for her." Struggles with spatial orientation earned her scorn on the playground; lacking an intuitive sense of direction, she repeatedly kicked the ball into her own team's goal. She eventually refused to play at all. She also refused to call any of her classmates by their nicknames, because it seemed too familiar. "It was like I had an alien complex," she says. "The result was that they treated me like an alien."

At the behest of a teacher at her private elementary school, Kiriana finally did get tested for disabilities. The results were inconclusive, and no one suspected autism in any form. "I knew she felt a little different," says Melissa. "But I never really thought anything was wrong with her."

Girls are generally recognized as superior mimics, says Tony Attwood, a pioneering Asperger's researcher. Those with AS hold back and observe until they learn the "rules," then imitate their way through social situations. But for a girl like Kiriana with undiagnosed Asperger's, her ability to manage her symptoms better than a boy can be less than a blessing; often it's a curse that keeps her suffering in silence.

"Girls can fake it quite well," says Liane Willey, a psycholinguist with AS who describes how she assumes different personalities when switching social gears in her autobiography, Pretending to Be Normal.

Kiriana's similar strategy amounts to remembering and rehearsing scripts. When she walks into a clothing shop, for example, she pulls up a mental dialogue box: "No thanks, I'm just looking," is what one should say if a saleswoman offers help. But as Attwood points out, such playacting is not intuitive, and is therefore exhausting.

Looking around Kiriana's apartment—at her collection of colored Easter eggs and logic games, her Edward Gorey books and whimsical drawings—it occurs to me: She's a successful young woman who still inhabits the magical domain of a child. I'd anticipated an awkward encounter based on what I knew about her syndrome. But she was poised and attentive. She smiled and laughed while we spoke, displaying a wry sense of humor. Her eyes wandered to the side as she formulated her thoughts, but the conversation flowed. Though her demeanor was cool, she answered questions enthusiastically and thoroughly. A little too thoroughly at times: I could see how some would find her company exhausting.

Many children immerse themselves in creative projects, but Kiriana, like most kids with Asperger's, was an extreme case. "We didn't see her that much, honestly," Melissa says. "Every now and then I'd pass her in the hall, but she was always working on something." Kiriana never had a lot of friends, but she consistently had at least one close confidante, invariably a sensitive, reliable girl. The boys would provoke her—say, by stealing her pencils. Over time, she began to suspect that any time a boy spoke to her it was to mock her. She became defensively standoffish. "I just wanted them not to talk to me, so I pulled together as much blunt sarcasm as I could and established myself as a weird, unfriendly girl."

posted March 18, 2009 11:41 PM         

At the age of 9, Kiriana, ever the scientist, asked her mother, "Does everyone see, hear, smell, taste, and feel exactly the same thing when they perceive the same object?" Around that same time, she developed a feverish curiosity about the medical experimentation the Nazis conducted during the Holocaust. "All my obsessions related to something profoundly catastrophic," she says. "I have a really hard time feeling emotionally aroused. Brutal, violent, scary things were interesting to me because that was the best way to feel something."

In a similar effort to manufacture emotions, Kiriana found it exciting to jog through her high school's murky backwoods at midnight in the snow wearing a T-shirt, shorts, and sockless sneakers. And her repeated readings of Bret Easton Ellis' American Psycho soon surpassed those of The Wonderful World of Prehistoric Animals. "I was partly drawn to serial killers because of my interest in patterns, logical induction, and puzzle solving," she remembers. "These twisted individuals took puzzles to a whole new level of interest." Captivated by the process of piecing together an event based on its physical trace, she fell asleep each night trying to come up with the "perfect crime," one that could not be reconstructed.

Incessant puzzling wasn't necessarily an academic boon: Practicing for the math portion of the SAT, Kiriana says, "I would ponder the logic instead of just using shortcut strategies." Though her scores were good, she didn't get into Princeton, her first-choice school. She happily went to Vassar instead.

During her first year there, she found herself part of a group of friends—a first. But stressed out by greater academic challenges and increasingly aware that she could not process lectures as well as her classmates, she sought help from a doctor, and then another. When a psychiatrist finally pulled the pieces together and diagnosed her with Asperger's, the label alone resolved a lifelong identity crisis. The diagnosis was the only one that reconciled, as she puts it, her special talent for being smart and stupid at the same time. "In this very small world of Asperger's," she says, "that's normal."

After graduation, driven partly by a desire to understand her own "neuro-atypical" mind, Kiriana set out for New York University to begin a Ph.D. program in neuroscience, where she now conducts emotion research on rats. Lacking the internal maps on which most of us depend, she often got lost in her lab, a stark maze of hallways lined with nondescript white doors. Toward the end of the school year, when no one was in sight, she stuck pieces of colored tape on the doors, visual cues to help her find her way.

posted March 19, 2009 12:29 PM         

Of course, I am neurodivergent with Dyslexia,Dyspraxia,ADHD.

Dyspraxia have overlapping traits with Aspergers Syndrome.

The speech/language delays/problems of my Dyslexia and Dyspraxia made me more Autistic-like.

After I got auditory therapy,speech therapy,phonics,and motor skills therapy, I became Aspergers-like.

I never had the problems with emotional/social cues like people with Aspergers,Autism. I am even hypersensitive to emotional/social cues. At times,if I am hyperfocusing on something of interest,I could overlook emotional/social cues. My idealism and just wanting to be a person's friend can also lead me to overlook emotional/social cues. I tend to have problems with eye contact because it's too stimulating,have problems with eye contact and processing language at the same time,and being very shy from insecurity.
Therefore, neurotypicals can easily misread me.

I am very hypersensitive,overremotional, and I tend to overreact,be upset easily by others, and to have emotional outbursts,and act out. Neurotypicals would tend to label in negative ways for that because they don't know me. Psychiatrists misdiagnosed me too. The mental health professionals that I saw in the navy didn't have a clue about my neurodivergence,and I certainly didn't understand it. I just thought I was stupid,and people in the navy thought I was stupid too. They even told me so.

We neurodivergents are very hard to pin down, and it's hard to understand and judge us based on neurotypical standards of behavior and the things that they teach you in psychology books.

Neurodivergent in a relationship can be very difficult. The neurotypical partner will often have problems understanding the neurodivergent. Neurodivergent needs to be open about his/her neurodivergence and how it affects him/her to help his/her neurotypical partner understand.

Those are things that I want to raise awareness as a neurodiversity advocate.

Raymond

posted April 02, 2009 03:17 AM         

____________________________________

A More Down-to-Earth Description
by Lois Freisleben-Cook

I saw that someone posted the DSM IV criteria for Asperger's but I thought it might be good to provide a more down to earth description. Asperger's Syndrome is a term used when a child or adult has some features of autism but may not have the full blown clinical picture. There is some disagreement about where it fits in the PDD spectrum. A few people with Asperger's syndrome are very successful and until recently were not diagnosed with anything but were seen as brilliant, eccentric, absent minded, socially inept, and a little awkward physically.

Although the criteria state no significant delay in the development of language milestones, what you might see is a "different" way of using language. A child may have a wonderful vocabulary and even demonstrate hyperlexia but not truly understand the nuances of language and have difficulty with language pragmatics. Social pragmatics also tend be weak, leading the person to appear to be walking to the beat of a "different drum". Motor dyspraxia can be reflected in a tendency to be clumsy.

In social interaction, many people with Asperger's syndrome demonstrate gaze avoidance and may actually turn away at the same moment as greeting another. The children I have known do desire interaction with others but have trouble knowing how to make it work. They are, however, able to learn social skills much like you or I would learn to play the piano.

There is a general impression that Asperger's syndrome carries with it superior intelligence and a tendency to become very interested in and preoccupied with a particular subject. Often this preoccupation leads to a specific career at which the adult is very successful. At younger ages, one might see the child being a bit more rigid and apprehensive about changes or about adhering to routines. This can lead to a consideration of OCD but it is not the same phenomenon

Many of the weaknesses can be remediated with specific types of therapy aimed at teaching social and pragmatic skills. Anxiety leading to significant rigidity can be also treated medically. Although it is harder, adults with Asperger's can have relationships, families, happy and productive lives.