What Autistic Girls Are Made Of

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http://www.nytimes.com/2007/08/05/magazine/05autism-t.html?_r=1 & scp=90 & sq=dyslex\

ia & st=nyt & oref=slogin

By EMILY BAZELON

Published: August 5, 2007

Caitlyn & Marguerite sat knee to knee in a sunny room at the Hawks Camp in

Park City, Utah. On one wall was a white board with these questions: What's

your favorite vacation and why? What's your favorite thing about yourself?

If you could have any superpower, what would it be?

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 India and Thailand my favorite thing about

myself is that I'm nice to people if I could choose any superpower I'd be

invisible, " she said in an unbroken stream. She looked up from her paper and

past Caitlyn, smoothing her turquoise halter top over the waist of a pair of

baggy cotton pants. Caitlyn was also staring into the middle distance. She

has gold-streaked hair, which was bunched on top, and wore a black T-shirt

with a sunburst on the front and canvas sneakers with skulls on the tops.

The girls didn't look uncomfortable, just unplugged.

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 United States. (Adults aren't

included because there is no good data on their numbers.) If 1 in 4 are

female, the girls number about 140,000. The C.D.C. estimates that about 42

percent of them are of normal intelligence, putting their total at roughly

58,000 (with the caveat that these numbers are, at best, estimates).

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.

(Bal. of article at link above)