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What
Autistic Girls Are Made Of |
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By EMILY BAZELON Published: August 5, 2007 The New York Times |
Read this article on line,
with photographs, at http://www.nytimes.com/
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Caitlyn, who is 13,
and Marguerite, who is 16 (I’ve used only their first names to protect their
privacy), held yellow sheets of paper on which they had written their
answers. It was the third day of the weeklong camp, late for icebreakers. But
the Hawks are kids with autistic disorders accompanied by a normal or high
I.Q. And so the main goal of the camp, run on a 26-acre ranch by a Utah
nonprofit organization called the National Ability Center, is to nudge them
toward the sort of back and forth — “What’s your favorite video game?” — that comes easily to most kids. Along with Caitlyn and Marguerite, there were nine
boys in the camp between the ages of 10 and 18. They also sat across from one
another in pairs, with the exception of one 18-year-old who was arguing with
a counselor. “All I require is a purple marker,” the boy said over and over
again, refusing to write with the black marker he had been given. A few feet
away, an 11-year-old was yipping and grunting while his partner read his
answers in a monotone, eyes trained on his yellow paper. Another counselor
hurried over to them. Marguerite was also reading her answers without eye
contact or inflection. “My favorite vacations were to A counselor noticed their marooned silence and
prodded Caitlyn to take her turn. At first, she ran quickly through her
answers, too. But Caitlyn loves fantasy — she is an avid writer of “fan
fiction,” spinning new story lines for familiar characters from “Pokémon” and
“Harry Potter” — and
the superpower question grabbed her. She looked at Marguerite. “If I could
have any power, I’d want to be able to transform into an animal like a
tiger,” she said, smiling and putting her hands in front of her face, fingers
tensed as if they were claws. Marguerite smiled and tentatively mirrored the
claw gesture. Caitlyn smiled back. “I like tigers,” she said, her eyes bright
behind her glasses. “Do you?” It was a small, casual encounter and also an
exceedingly rare one — a taste of teenage patter shared by two autistic
girls. Autism is often
thought of as a boys’ affliction.
Boys are three or four times as likely as girls to have classic autism
(autism with mental
retardation, which is now often referred to as cognitive impairment). The
sex ratio is even more imbalanced for diagnoses that include normal
intelligence along with the features of autism — social and communication
impairments and restricted interests; this is called Asperger’s
syndrome (when there is no speech delay) or high-functioning autism or, more
generally, being “on the autistic spectrum.” Among kids in this category,
referral rates are in the range of 10 boys for every girl. According to the Centers
for Disease Control, there are about 560,000 people under the age of 21
with autism in the Because there are so many fewer females with autism,
they are “research orphans,” as Ami Klin, a
psychology and psychiatry professor who directs Yale’s autism
program, puts it. Scientists have tended to cull girls from studies because
it is difficult to find sufficiently large numbers of them. Some of the
drugs, for example, commonly used to treat symptoms of autism like anxiety
and hyperactivity have rarely been tested on autistic girls. The scant data make it impossible to draw firm
conclusions about why their numbers are small and how autistic girls and boys
with normal intelligence may differ. But a few researchers are trying to
establish whether and how the disorder may vary by sex. This research and the
observations of some clinicians who work with autistic girls suggest that
because of biology and experience, and the interaction between the two,
autism may express itself differently in girls. And that may have
implications for their well-being. The typical image of the autistic child is a boy who
is lost in his own world and indifferent to other people. It is hard to
generalize about autistic kids, boys or girls, but some clinicians who work
with high-functioning autistic children say they often see girls who care a
great deal about what their peers think. These girls want to connect with
people outside their families, says Janet Lainhart,
a professor of psychiatry and pediatrics at
the University of Utah who treats
Caitlyn and Marguerite. But often they can’t. Lainhart
says that this thwarted desire may trigger severe anxiety and depression. Other specialists are not sure that girls struggle
more in these ways. “This is a profile of both boys and girls,” Klin says of the wish to connect that some people with
autism have. But he agrees with Lainhart that it is
easier for Asperger’s boys to find other boys —
either on or off the autistic spectrum — who want to spend hours on their
Game Boys or in a realm of Internet fantasy. Klin
and Lainhart also say they think that the world is
a more forgiving place for boys with the quirks of Asperger’s
because, like it or not, awkwardness is a more acceptable male trait. This gender dynamic doesn’t necessarily affect girls
with Asperger’s when they are very young; if
anything, they often fare better than boys at an early age because they tend
to be less disruptive. In 1993, Catherine Lord, a veteran autism researcher,
published a study of 21 boys and 21 girls. She found that when the children
were between the ages of 3 and 5, parents more frequently described the girls
as imitating typical kids and seeking out social contacts. Yet by age 10,
none of the girls had reciprocal friendships while some of the boys did. “The
girls often have the potential to really develop relationships,’ says Lord, a
psychology and psychiatry professor and director of the Autism and No doubt part of the problem for autistic girls is
the rising level of social interaction that comes in middle school. Girls’
networks become intricate and demanding, and friendships often hinge on
attention to feelings and lots of rapid and nuanced communication — in
person, by cellphone or Instant Messenger. No
matter how much they want to connect, autistic girls are not good at empathy
and conversation, and they find themselves locked out, seemingly even more
than boys do. At the University of Texas
Medical School, Katherine Loveland, a psychiatry professor, recently compared
700 autistic boys and 300 autistic girls and found that while the boys’
“abnormal communications” decreased as I.Q. scores rose, the girls’ did not.
“Girls will have more trouble with social networks if they’re having greater
difficulty with communication and language,” she says. And so girls with autism and normal intelligence may
end up at a particular disadvantage. In a new study published in May, a group
of German researchers compared 23 high-functioning autistic girls with 23
high-functioning boys between the ages of 5 and 20, matching them for age,
I.Q. and autism diagnosis. Parents reported more problems for girls involving
peer relations, maturity, social independence and attention. The difficulty may continue into adulthood. While
some men with Asperger’s marry and have families,
women almost never do, psychiatrists observe. A 2004 study by two prominent
British researchers, Michael Rutter and Patricia Howlin, followed 68 high-functioning autistics over more
than two decades. The group included only seven women, too small a sample to
reach solid conclusions about gender differences, Rutter
and Howlin caution. But 15 men — 22 percent of the
sample — rated “good” or “very good” for educational attainment, employment,
relationships and independent living, while no women did. Two women rated
“fair,” compared with 11 men, and the other five women were counted as “poor”
or “very poor.” None had gone to college. None reported having friends or
living on their own. Only one had a job. Undermined by anxiety and
depression, women with autism appear to be more often confined to the small
world of their families. When Caitlyn started kindergarten and didn’t play normally with other
kids, her mother, Juli, thought it was because she
hadn’t gone to preschool. The first warning of real trouble came from the
first-grade gym teacher, who told Juli that Caitlyn
exposed herself to the class. Caitlyn is overweight, and she has always been
private about her body. Juli couldn’t imagine her
daughter taking off her clothes in public, and when she asked what had
happened, Caitlyn said another girl had pulled down her pants. “Caitlyn stood
there mortified,” Juli says. “But she couldn’t
express that to the teacher.” Caitlyn lives with her mother, her older sister, the
girls’ great-grandparents and a pair of poodles in Contrary to the Asperger’s
stereotype, Caitlyn struggles in math but tests in the highly gifted range in
reading and writing. This is another sex difference that Lord sees among her
patients. “I don’t have any real data, but a lot of high-functioning girls
are real readers — not great on subtleties, but they like fantasies and the
‘Baby-Sitters’ series,” she says. “The boys are much less so.” In elementary school, Caitlyn went to
special-education classes for math and social skills. At 11, as other girls
began to slip out of reach, Asperger’s was
diagnosed. The shift a year later to junior high for seventh grade was a
jolt. By the second week of school, a few boys were mocking Caitlyn’s weight
and calling her weird while other kids laughed. “No one would sit by me at
lunch,” Caitlyn says. Girls told her that they didn’t want her to be in their
reading group. Caitlyn did her homework, but she was too anxious to walk to
the front of the room to turn it in. At home, her neighborhood friend no
longer came out to play. In the winter, Caitlyn switched from a
special-education math class into a mainstream one, and the kids in her new
class made her miserable. For days she refused to go to school. She told Lainhart: “No one likes me at lunch. I’m very sad.” (With
Juli’s and Caitlyn’s permission, I read Lainhart’s notes on Caitlyn’s treatment.) After a huge outburst
of anger at home, Caitlyn told her mother that she wanted to die. At her next
appointment with Lainhart, she said: “I listen to
people’s conversations during free time in science. They talk about live
games, R-rated movies, outfits. I feel left out.” Caitlyn told Lainhart about two dreams. In one, her school had a
bridge running through it, and she kept falling off. In the second, she was
in the lunchroom throwing a party; no one came. Lainhart
says that while boys are aware of rejection and bullying, in her experience
they are not hurt by it to the extent that some girls are. “I have rarely had
a male patient with autism become suicidal or express such intense emotional
pain,” she says. Caitlyn has never hit another child. But at school,
her retorts to her peers — “I yelled at a . . . little bimbo. They yelled at
me,” she told Lainhart during one appointment —
pushed them further away. With Lainhart’s help, Juli persuaded the school to let her daughter eat lunch
in a classroom rather than in the cafeteria. Still, Caitlyn’s grades dropped
from A’s and B’s to D’s and F’s. Her anxiety level spiked, and her sadness
bloomed into depression. Lainhart has seen the same blend of anxiety and depression
in other female patients. Like Caitlyn, Marguerite’s serious problems date
from middle school. In sixth grade, she moved to Since 1990, when she was recruited to work with autistic children by Susan Folstein, a prominent Johns Hopkins researcher, Lainhart has been interested in the relationship between
autism and depression. In a 1994 paper, Lainhart
and Folstein pointed out that despite the 4-to-1
male-female ratio for autism, females made up half the autistic patients with
mood disorders described in the medical literature. The case reports may not
represent the population as a whole; still, the overrepresentation is
suggestive. Lainhart is currently looking at the
relationship between autism and depression in boys and girls and the
potential link to depression in their parents and siblings. “We know that
anxiety and depression are co-morbid,” meaning that they occur together, Lainhart says. “And we know that depression is worse for
women in the general population. But what’s the link to autism? And is it
worse for girls?” Social anxiety affects Lainhart’s
female patients into adulthood. Liz Lee, who is 43, is studying for her
master’s degree in electrical engineering, yet she cannot cope with going to
lunch with the other graduate students at the lab where she works. Ash
Baxter, who is 22, spends hours making art, sewing dolls with wild yarn hair
and macramé-edged suits; she created an extraordinary blue-and-gold octopus mask
out of a three-foot gourd she found in the garage. She is talented and would
like to attend art school, but Baxter can’t master her anxiety well enough to
learn to drive or live in a dorm, so college art classes remain out of reach.
Another patient, Charlotte (she asked that I not use her last name) is 23 and
goes to a social-skills class that Lainhart runs
for her patients in their late teens and early 20s. Because of the dearth of
females, the class is mostly male, and There is preliminary evidence that girls and women
also vary from the male Asperger’s profile in terms
of their interests, as Catherine Lord suggests. David Skuse,
a psychiatry professor at the With her high aptitude for reading and writing and
her difficulties with math, Caitlyn fits Skuse’s
model. Even as she was failing school last year, she kept up her fan fiction,
posting stories she had written on the Web site Gaia Online. On the 40-mile
drive home from camp, she told me about her plan to write an original
eight-book fantasy series about a werewolf, to be called “Midnight Wind.” One of the best-known theorists on sex difference
and autism, Simon Baron-Cohen, comes at these questions from another angle. A
psychology professor and director of the Autism Research Centre at Cambridge University,
Baron-Cohen has characterized autism as a condition of the “extreme male
brain.” His research shows that in the general population men are more likely
than women to score low on a test of empathy and high on a test of
recognizing rules and patterns, or “systemizing.” High systemizing together
with low empathy correlates with social and communication deficits and, at
the extreme end of the scale, with autism. Baron-Cohen is currently studying
whether elevated levels of fetal testosterone
— a prime driver of masculinity — are linked to autistic traits. Baron-Cohen says that he believes that autistic
girls are strong systemizers. That quality may
manifest itself in letters rather than numbers. But in his view, the thought
processes for Asperger’s girls mirror those of
boys. He explains, “These females often feel more compatibility with typical
males simply because typical males may be more willing to adhere to the
linear, step-by-step form of thinking and conversation — more like debating
or playing chess or doing logic.” To Lainhart, Baron-Cohen’s
extreme-male-brain theory is an apt description for a subset of her female
patients, for example Liz Lee, who in pursuing electrical engineering is
training for a classic Asperger’s profession. Lee is
socially aloof: she usually sits on the floor with her back to Lainhart during their sessions, twirling the propeller of
a toy helicopter. Eye contact makes Lee angry, and she says she would like to
live alone in the desert. But based on their clinical experience, Lainhart and also Skuse see
autism as a heterogeneous disorder. Its profile may change and expand as more
is understood about girls, whose autism, they worry, often goes undiagnosed.
That is partly, Skuse posits, because girls’
general aptitude for communication and their social competence helps some Asperger’s girls “pass” — they pick up on their
difference and carefully mask it by mimicking other girls’ speech and manner
and dress. In a sense, their femaleness allows some girls to seem less autistic.
It is as if they start off with a social advantage — Skuse
sees this as a 20-point bonus on a scale of 100 — that helps counter the
disorder. This idea isn’t necessarily at odds with the findings that show
girls to be more seriously affected by autism, Skuse
says, because the girls who succeed in masking their deficit wouldn’t be
included in studies. And so they are missing from the picture. “There is no
doubt in my mind that the way we have defined autism currently biases our
assessments strongly in the direction of identifying a male stereotype,” he
says. The C.D.C. agrees and says that as a result the estimate for the number
of girls with autism and normal intelligence may be low. Why would
autism express itself differently depending on sex? The short answer is that
no one knows. Genetic researchers, however, have just begun to hint at
possibilities. In the last two years, new data-pooling efforts have yielded
two major genetic-linkage studies — attempts to link autism to specific
chromosomes — that suggest that some of the genes underlying autism may be
different in males and females. By isolating sex as a variable, scientists
are seeing potential genetic hot spots for autism. “By comparing males and
females, we will have a much better chance of discovering the causes of
autism,” says Geraldine Dawson, a psychology professor and director of the University of Washington
Autism Center, who was a co-author of one of the studies. Studies that use the latest brain-scanning tools —
magnetic resonance imaging and diffusion tensor imaging — generally focus on
boys. But a single study of M.R.I.’s of both boys
and girls found differences in their brain anatomy. Published in April in The
Journal of the These are small and preliminary studies, but their
findings may relate to a puzzle of autism: while overall, there are more
mentally retarded autistic boys than girls, a greater proportion of autistic
girls are retarded — 58 percent compared with 42 percent for boys, according
to the C.D.C. As for Asperger’s girls, Lainhart, who continues to conduct brain research, says
she hopes eventually to shed light on the deficits of girls like Caitlyn and
Marguerite and suggest new treatments for them. “In children with dyslexia,
scientists identified where the basic cognitive deficits were,” she says.
“Then they intervened to go after those deficits, and they saw the brain
change in those areas.” In the meantime, girls
with autism and normal I.Q.’s pose a particular
challenge for schools. Though mainstreaming has its benefits, autistic kids
risk becoming outcasts in a regular classroom. Yet if girls go to a
special-education program or a separate school, they are often swimming in a
sea of boys. Lord pointed to this as a factor in girls’ lack of friendships
in her 1993 study. When the girls in her sample were shifted to specialized
programs, “their opportunities to meet girls and women with some common
interests were even more limited than The And so I wondered whether the girls would feel
overwhelmed, as “Hi, Michael,” she said. He didn’t look up. Krissy sat down next to him and watched him play on his
Game Boy. They talked quietly about his progress; she knew the game. A few
minutes later, she found her Connect Four partner again, and they decided to
play Operation. They talked about the rules, but when Krissy
tripped the buzzer, he let her finish taking out the body parts she was
maneuvering. Krissy declared victory and moved on
again, this time to lie on the floor next to a boy who was building with
metal rods and blue glass balls. “Do you need help?” she asked him. “No,” he answered. “Can I at least play with you?” Krissy
persisted. The boy grunted. Without talking more, they each built a
structure. Krissy has been at Harbour since
first grade, and the small size of her class means that she knows the boys
well. Her teachers say she is at ease with them because she shares their Game
Boy enthusiasm and watches the same movies. But sometimes Krissy’s
interests seem entirely girlish. She was excited about straightening her hair
and then styling it into corkscrew curls for her interview with me and showed
off pictures she had drawn of princesses, covered with hearts. Harbour makes a concerted effort to give its girls the
chance to develop relationships with one another. The girls’ lunch periods
coincide to give them time together. A social worker, Kelli Remmel, runs a regular “girls club” for a group of about
half a dozen. “There are some things the girls don’t want to discuss in front
of their male peers,” she says. “It’s a chance for them to talk about boys,
how to handle hormonal changes, other girls, their bodies, dating.” Krissy seems to be getting the social opportunities and
support that Lord and Lainhart want for the girls
they treat. Lord and Lainhart try to
help by setting up social-skills groups for their patients. But families must
pay for the classes out of pocket because medical insurers generally don’t
pay for treatment and services that focus on autism — a terrible problem for
her patients, Lainhart says. So the groups tend to
meet only a couple of times a month for a few hours. At the Hawks Camp in But the other kids were paying Caitlyn no mind. This
wasn’t a group that Caitlyn had to fear. She balled her hands into fists,
visibly holding her anxiety at bay. “Sometimes I feel like I’m weird and
ugly,” she said, “but I’m not going to today. I’m confident!” She strode out
to Jet Ski and later returned with a description that she planned to use in a
future story: “It was like riding a dragon through the storm.” Back at camp, the Hawks poured onto the playground.
During the school year, Caitlyn had been excused from gym class because she
was so nervous about changing her clothes and running around in front of her
classmates. As she sat on a swing and watched kids play tag, a counselor
named Claire came over. As she and Caitlyn talked, Caitlyn did all the tiny
things that people do to engage one another, smiling, laughing, gesturing, looking Claire in the eye. Claire urged her to join the
game and called out, “Caitlyn’s playing!” Caitlyn protested. But Claire
persisted, and finally Caitlyn yelled, “O.K., where’s the base?” A teenage
boy pointed to the monkey bars, and Caitlyn ran for it. Her glasses slipped
off her nose, and her shorts slipped a bit, too. She hiked them up and kept
running, surrounded by other kids. Sweating and laughing, she yelled, “Safe!”
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Emily
Bazelon is an editor of the online publication Slate. Her last article for
the magazine was about the grass-roots pro-life movement. |
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