Saturday, February 17, 2007

The Girl with a Boy's Brain

The following is an excellent article from Psychology Today called, "The Girl with a Boy's Brain."

Little is written about girls and autism or Asperger's Syndrome. I was pleased to come across this piece and I hope anyone who stops by my blog will take the time to read it.

There is so much of me in the girl profiled in the article and so much of Beans and Abby too. I am always thankful when I find stories written about girls who have wrestled with ASD and found their way to a satisfying life.

Happy reading!

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 ago, 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.

In school, Kiriana barely spoke at all. One teacher feared she was deaf. "She pretty much refused to interact with other kids," says Melissa. She was often distracted—but not in the ricocheting manner of a kid with an attention-deficit disorder. "When the teacher called on me, I was frozen," recalls Kiriana. "I was often accused of not paying attention or of being on a different planet, but I was actually paying close attention to something else."

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."

To any animal that crossed her path, however, Kiriana was the warmest creature imaginable. On rainy days, she would gingerly pick up earthworms from the sidewalk and move them to the grass. She once rescued a stray kitten that her neighbor's Rottweilers were hungrily circling and took her home.

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.

Listening comprehension is still a source of strife for Kiriana. "When I watch a movie, I have to turn the volume way up to understand dialogue, but way down whenever there is background noise or music," she says. "When I go to hear a lecture on a subject, it's like I'm listening to a foreign language." But Kiriana makes efforts to work around her deficiencies. After a few mishaps, she explained to one scientist she works for that she just can't remember spoken instructions. "Now that he's aware of that, I can just run and get a pen and write it down." She tries to remind herself that as neuroscientists, her colleagues are particularly likely to understand that her brain is wired differently. Besides, she says, "It's a profession where everyone is a bit odd."

At the moment, Kiriana is combining her current fascinations for science, writing, and drawing as she translates a textbook on neurodevelopment into metaphorical scenes. One page of her sketchbook shows two rivers, labeled the "dorsal" and "ventral" streams, along which undifferentiated cells migrate to their destinations. Sharks in the water represent inhibitors to cell development. The project is time consuming, but it's the best way she's found for mastering complex ideas.

Kiriana's never taken an art class, though her drawings are sophisticated and beautiful. Her spatial orientation problems don't extend to her ability to imagine objects and render them on the page. "To me, art is a part of science, of observation—it's finding the details that define an object."

Last summer, Kiriana went several weeks without speaking to anyone she knew. "I feel most comfortable being alone," she says. "I don't feel lonely very often, and when I do, it's usually not a general feeling of loneliness as much as a wish to be with a certain person or people." Parties tire her, and when she meets someone new she fears she'll come off as boring. "The things most people think of as fun are work to me," she says, citing the complicated dynamics of relationships and social interaction. "To me, fun would be reading a textbook."

Friendships do bring her pleasure, though. When she was 18, she met the closest friend she's ever had, a gay man. "He was the only person I ever felt really connected to, where I didn't mind if he hugged me." When a friend is upset, she can give advice if she can relate to the dilemma. But when it comes to being there for someone who is crying, Kiriana writhes under the pressure to respond the way a "normal" person would. "Anything schmaltzy makes me squeamish," she says. "My parents try to be affectionate, and they get hurt feelings sometimes because I don't like to hug them."

Kiriana gets rushes of happiness, pride, and guilt, but abstract concepts—patriotism, for example, or spirituality—don't rouse her. "I do cry," she says, "but it's usually out of anger or frustration. Rarely do I feel true sadness." She did feel terribly sad this year over the death of Slinky, her cat.

Kiriana is attracted to men and sometimes longs to be in a relationship, yet it's hard for her to have any idea whether men she meets—such as the ones who, captivated by her looks, linger by her table at the cafe where she studies—are being flirtatious or merely polite. And maintaining eye contact is always a challenge. "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." If she is really taken with someone, she often becomes so flustered that she drops something or starts choking—an adorable quirk, but one that leaves her even more ill at ease.

One remark that Kiriana has heard repeatedly is, you must have been a nerd growing up. "I wish I'd been a dork or a nerd, because those are things that people recognize," she says. "I was a different species." It's a perspective that may account for her fierce identification with animals. "If I saw a person lying on the street, my first response would be, I wonder what's wrong with them, I should call 911. It's not emotional, it's practical," she says. "If I saw a dog lying on the street, I would be on my knees, in pain."

Psychologist Shana Nichols has noticed that nearly all the girls with AS that she sees are avid animal lovers. "Animals don't care if you can't have small talk about the weather," she says. "There's just not as much anxiety as there is with human interactions, so you can really connect."

Kiriana behaves loyally toward her family and friends, but she balks at saying she loves anyone. "While there are many people who certainly matter to me, I'm not sure I can qualitatively summarize whether or not that constitutes love," she says. She doubts she could ever fall in love.

For as long as she can remember, she's had a need for rational understanding, to take things apart to know how they're put together. That kind of thinking has helped her become an ace science student, a precise artist, a forceful writer—all in spite of, or maybe because of, her Asperger's traits. The paradoxes of her personality—those exceptional bursts of creativity and disability, a desire for closeness that competes with her contented solitude—will keep generating tough puzzles for Kiriana to work on, even if the actual solutions are more elusive.

"I spend a lot of time watching the rats in the lab," she says. "Sometimes when I watch them, I feel jealous. The way they interact is so connected. And when they play, I often wish that I could join their party."

For God has not given us a spirit of fear, but of power and of love and of a sound mind.
2 Timothy 1:7

Friday, February 16, 2007

excerpt from "Literal Land"

Last night, Emma Jean was ready to crash before 7pm bedtime. I went into her room to tuck her in and I asked her, "Oh baby, are you just pooped out?"

She replied, "Well, I actually pooped out a little bit, but no diarrhea or anything."

You'd think by now I would know to choose my words more carefully.

"God has brought me laughter, and everyone who hears about this will laugh with me."
Genesis 21:6

Thursday, February 08, 2007

1 in 150

WASHINGTON, DC (February 8, 2007) -- This morning, the Centers for Disease Control and Prevention (CDC) released, through its Morbidity and Mortality Weekly Report (MMWR), the latest revised prevalence figures for autism. The report indicates that the prevalence of autism is now 1 in 150, up from the 1 in 166 figure reported by the CDC in January, 2004.

Today's report states, "Findings from this first U.S. multi-site collaborative study to monitor ASD prevalence demonstrated consistency across the majority of sites, with prevalence statistically significantly (p<0.001) higher in New Jersey. Average ASD prevalence across all six sites was 6.7 per 1,000 children aged 8 years. These results indicate that ASDs are more common than was believed previously."

Speaking at a Capitol Hill briefing about the new data, Dr. Gary Goldstein, Autism Speaks' Scientific Advisory Committee Chair and President of the Kennedy Krieger Institute said, "These new numbers provide a much more accurate picture of a disorder that has undoubtedly become a major national health crisis. Our dedication to finding critical answers about autism -- potential causes, better treatments and, hopefully, a cure -- must become that much more urgent today."

These new prevalence estimates are the first to come from multiple sites utilizing the same methodology for the same points in time. (Previous prevalence estimates have been from single sites and have relied on differing methodologies) . According to the CDC, these data represent the most comprehensive effort to obtain accurate prevalence figures for Autism Spectrum Disorders to date, and offer important information about the prevalence of these conditions in multiple parts of the U.S.

As part of this study, six ADDM sites evaluated the prevalence of ASDs for children who were eight years old in 2000 (born in 1992): Arizona, Georgia, Maryland, New Jersey, South Carolina and West Virginia.

An additional eight sites determined ASD prevalence for children who were eight in 2002 (born in 1994): Alabama, Arkansas, Colorado, Missouri, North Carolina, Pennsylvania, Utah and Wisconsin.
What does this new number mean? If your life has not been touched by autism yet, it will be. Either in your own family, or your neighbor's, your children's classmates, your coworker's, someone that you know will have autism.

If children were going blind at this rate you can believe the government would have done something by now. Let's pray that the Combating Autism Act is just the first step.

Periodically, people praise my commitment to the girls, to autism.
While I appreciate their kind words, and I really do, I must say that as a parent of children on the spectrum, I am not terribly unique. I interact with so many parents of children with autism, I feel confident in saying that you will rarely meet a more dedicated group of people in your life. With little support and guidance, they devote themselves to forging a path towards knowledge and understanding despite the incredible obstacles that stand in the way of finding help for their children and their families.

The release of such staggering numbers naturally lead people to ask, "Why?" And burgeoning distrust in the medical profession (largely due to the insidious behavior of insurance and pharmaceutical companies, IMO), leads reasonable people to wonder about possible misdiagnoses of the disorder. To that I respond:

he way autism is diagnosed has not changed in decades. "Better diagnostics" does not account for the increase in diagnoses. More autism is being diagnosed because there is more autism. Period.

Because the red flags for autism are more thoroughly understood now, children are being identified as at risk for autism or as autistic younger everyday. I wish Abby and Emma Jean had been "labeled" at fourteen months. If we had started interventions then, who knows what heartache we could have avoided, not to mention what their prognosis could have been now.

FYI, in families where a sibling has already been diagnosed with autism, children as young as a year are being flagged.

"But labels are potentially damaging to children. They internalize the label. Doesn't that indicate we should reserve labeling until a diagnosis of autism is clear?"

Ahh labels. Personally, I believe they only have as much stigma as people allow them to have. I don't worry over labels, nor do I go out of my way to keep the girls' autism under wraps. To me, doing so would only permit people to remain ignorant of the many faces that autism wears. When people say to me, "Well your girls don't look autistic!" That just proves their ignorance on the subject. I don't mean that in a critical way, it just demonstrates how limiting labels are when they are only applied to the most severe cases.

"But is autism a real disease? Why is it called a disorder? It must be psychological."

Autism is considered a disorder.

Disorder ~ A disease is any abnormal condition of the body or mind that causes discomfort, dysfunction, or distress to the person affected or those in contact with the person. Sometimes the term is used broadly to include injuries, disabilities, syndromes, symptoms, deviant behaviors, and atypical variations of structure and function, while in other contexts these may be considered distinguishable categories.

Disease ~ An abnormal condition in which its physiology, morphology, and/or development is altered under the continuous influence of a pathogen.

In other words, within a disease there is illness, while within a disorder there is a disruption. Does that make sense?

There is strong evidence of a genetic component to autism, in MOST cases.

There are cases of environmental "autism." Autism looks a lot like mercury poisoning. That said, there have been great strides in isolating the genes that may be the genetic markers for autism.

One reason I believe there is a greater incidence of autism diagnosed now is that formerly, many autistics would have been diagnosed as MR. Many still are, because MR is diagnosed via cognitive testing and most of those tests rely on measures of verbal communication performance. Many autistics never learn to communicate verbally, or through sign, but when facilitated communication is applied, they end up being recognized as having average, if not above average IQ's. The woman profiled in "Autism is a World," is a perfect example of this.

"Children deserve the chance to develop before being saddled with some label. If the intervention used to correct autism's harm are the same, with or without a label, then why risk it?"

Well...first of all, why was a child who was labeled autistic suddenly freed from the label? Because they no longer meet the educational criteria? Frankly, from a school's point of view neither of my girls need speech therapy. That is because by their criteria, my girls are capable of articulation and on the surface, understanding verbal communication. But, they struggle tremendously with the give and take and nonverbal understanding of communication that most people take for granted as being understood, especially with children who look so"normal" and seem to possess so much knowledge and comprehension. They still need speech therapy. Not like a child who cannot speak at all or struggles with articulation, but they still need it. Will schools provide it for them without a dx? No.

Socially, schools base needs on a baseline that centers around independence. Are my girls potty trained? Yes. Can they get dressed on their own? Yes. Can they ask for help? Yes. To the latter I can only respond, "But will they?" Do my girls understand the give and take of the play ground? Not without help. Do they "get it" when they have annoyed someone with random, one-sided conversation about their favorite color, number, or wheelchairs? No. They need social skills help. Unlike typical children who learn from unsuccessful interactions with their peers, mine don't, not without direct and repeated intervention and instruction. Does this matter? Hell yeah! Have you ever encountered adults who don't know when to let something go? Who seemingly randomly volunteer too much information? Who bore you to tears on a subject you could care less about? These are ongoing, real life issues that people with autism struggle with and because sometimes their disabilities are "hidden" and they appear functional, they do not get the help they need to truly operate in society as successfully as they might if only they had some help. Unfortunately, without a diagnoses, that help is out of reach.

As long as the understanding of what autism is and what it is not, is limited to "Rain Man," it is unlikely that any potential deficits will be addressed. The most crippling aspect that our most "high functioning" kiddos face is not what others think of them, but rather what they think of themselves. Without an understanding and support for why they are the way they are, how can they possibly make the most of who they are?

Recently, how autism is diagnosed on a scale was explained to me like this: Based on the CARS, a child who is not autistic would score a one or a two. A child who scores a 19 or a 29 (the cut off on the CARS is 30, I believe) is still autistic. They just don't meet the criteria of the CARS.

Most schools use a child's CARS score to determine whether or not the child qualifies for autism services.

I want my girls to know that they have problems understanding the world around them and even more importantly, that the world around them may have problems understanding them. Without being able to name that, how else can they expect to distinguish themselves from some regular Joe who is just lazy about listening and sloppy in their interpersonal relationships?

Do you think, given someone with autism's deep and ongoing lack of understanding of how "typical" communication works, that without a diagnoses they are somehow aided or propelled to success?

No, when the autistic label is brushed aside or removed or denied, then their ability to differentiate between personal failure versus an organic deficit is removed. How does that help anyone? If as an employer you knew that the person you hired struggles with interpersonal relationships in the office, but you knew that the skills were present to enhance your business immensely, would you be more or less motivated to help them where they are weak so that they could ultimately make your business stronger? For the autistic person, when the label is removed because they are "high functioning" does that eliminate their interpersonal weaknesses or their technical ability? No, but it will cripple their ability to contribute, primarily because they will judge their abilities by their success, without regard to their organic weaknesses in the areas of nonverbal and social communication.


The only credibility that autism has lost with the surge of its diagnoses is its status of a rare disorder. The question is no longer if autism will touch your life somehow, but rather when.

Hear this, you elders;
listen, all who live in the land.
Has anything like this ever happened in your days
or in the days of your forefathers?

Tell it to your children,
and let your children tell it to their children,
and their children to the next generation.
Joel 1:2-3
  • International Day of Prayer for Autism & Asperger's Syndrome