Time Magazine article on Autism

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Inside the Autistic Mind

A wealth of new brain research--and poignant testimony from people

who have autism--is lifting the veil on this mysterious condition

By CLAUDIA WALLIS

May 15, 2006

The road to Hannah's mind opened a few days before her 13th birthday.

Her parents, therapists, nutritionists and teachers had spent years

preparing the way. They had moved mountains to improve her sense of

balance, her sensory perception and her overall health. They sent in

truckloads of occupational and physical therapy and emotional

support. But it wasn't until the fall of 2005 that traffic finally

began to flow in the other direction. Hannah, whose speech was

limited to snatches of songs, echoed dialogue and unintelligible

utterances, is profoundly autistic, and doctors thought she was most

likely retarded. But on that October day, after she was introduced to

the use of a specialized computer keyboard, Hannah proved them

wrong. " Is there anything you'd like to say, Hannah? " asked Marilyn

Chadwick, director of training at the Facilitated Communication

Institute at Syracuse University.

With Chadwick helping to stabilize her right wrist and her mother

watching, a girl thought to be incapable of learning to read or write

slowly typed, " I love Mom. "

A year and a half later, Hannah sits with her tutor at a small

computer desk in her suburban home outside New York City. Facilitated

communication is controversial (critics complain that it's often the

facilitator who is really communicating), but it has clearly turned

Hannah's life around. Since her breakthrough, she no longer spends

much of her day watching Sesame Street and Blue's Clues. Instead, she

is working her way through high school biology, algebra and ancient

history. " It became obvious fairly quickly that she already knew a

lot besides how to read, " says her tutor, Tonette .

During the silent years, it seems, Hannah was soaking up vast

storehouses of information. The girl without language had an

extensive vocabulary, a sense of humor and some unusual gifts. One

day, when presented her with a page of 30 or so math problems,

Hannah took one look, then typed all 30 answers. Stunned,

asked, " Do you have a photographic memory? " Hannah typed " Yes. "

Like many people with autism, Hannah is so acutely sensitive to sound

that she'll catch every word of a conversation occurring elsewhere in

the house, which may account for much of her knowledge. She is also

hypersensitive to visual input. Gazing directly at things is

difficult, so she often relies on her almost preternatural peripheral

vision. Hannah's newfound ability to communicate has enabled her

intellect to flower, but it also has a dark side: she has become

painfully aware of her own autism. Of this, she writes, " Reality

hurts. "

MORE THAN 60 YEARS AFTER AUTISM WAS first described by American

psychiatrist Leo Kanner, there are still more questions than answers

about this complex disorder. Its causes are still uncertain, as are

the reasons for the rapidly rising incidence of autism in the U.S.,

Japan, England, Denmark and France. But slowly, steadily, many myths

about autism are falling away, as scientists get a better picture of

what's going on in the bodies and brains of people with autism and as

more of those who are profoundly affected, like Hannah, are able to

give voice to their experience. Among the surprises:

• Autism is almost certainly, like cancer, many diseases with many

distinct causes. It's well known that there's a wide range in the

severity of symptoms--from profound disability to milder forms like

Asperger syndrome, in which intellectual ability is generally high

but social awareness is low. Indeed, doctors now prefer the term

Autistic Spectrum Disorders (ASD). But scientists suspect there are

also distinct subtypes, including an early-onset type and a

regressive type that can strike as late as age 2.

• Once thought to be mainly a disease of the cerebellum--a region in

the back of the brain that integrates sensory and motor activity,

autism is increasingly seen as a pervasive problem with the way the

brain is wired. The distribution of white matter, the nerve fibers

that link diverse parts of the brain, is abnormal, but it's not clear

how much is the cause and how much the result of autism.

• The immune system may play a critical role in the development of at

least some types of autism. This suggests some new avenues of

prevention and treatment.

• Many classic symptoms of autism--spinning, head banging, endlessly

repeating phrases--appear to be coping mechanisms rather than hard-

wired behaviors. Other classic symptoms--a lack of emotion, an

inability to love--can now be largely dismissed as artifacts of

impaired communication. The same may be true of the supposedly high

incidence of mental retardation.

• The world of autism therapy continues to be bombarded by cure-of-

the-day fads. But therapists are beginning to sort out the best ways

to intervene. And while autism is generally a lifelong struggle,

there are some reported cases in which kids who were identified as

autistic and treated at an early age no longer exhibit symptoms.

THE CURIOUS INCIDENCE

DR. THOMAS INSEL, DIRECTOR OF THE National Institute of Mental Health

(NIMH), which funds much of the nation's autism research, remembers a

time when the disorder was rarely diagnosed. " When my brother trained

at Children's Hospital at Harvard in the 1970s, they admitted a child

with autism, and the head of the hospital brought all of the

residents through to see, " says Insel. " He said, 'You've got to see

this case; you'll never see it again.' "

Alas, he was mistaken. According to the Centers for Disease Control

and Prevention (CDC), about 1 in 166 American children born today

will fall somewhere on the autistic spectrum. That's double the rate

of 10 years ago and 10 times the estimated incidence a generation

ago. While some have doubted the new figures, two surveys released

last week by the CDC were in keeping with this shocking incidence.

No one can say why the numbers have soared. Greater awareness and

public health campaigns to encourage earlier diagnosis have surely

played a part, since in the past, many such children were probably

labeled retarded or insane and hidden in institutions. But

environmental factors may also be contributing to the spike. To get

to the bottom of that mystery and others, federal funding for autism

research has more than tripled in the past decade, to $100 million,

although it pales in comparison with the estimated $500 million spent

on childhood cancers, which affect fewer youngsters.

At the Center for Children's Environmental Health and Disease

Prevention at the University of California at , toxicologist

Isaac Pessah is studying hair, blood, urine and tissue samples from

700 families with autism. He's testing for 17 metals, traces of

pesticides, opioids and other toxicants. In March Pessah caused a

stir by releasing a study that showed that even the low level of

mercury used in vaccines preserved with thimerosal, long a suspect in

autism, can trigger irregularities in the immune-system cells--at

least in the test tube. But he does not regard thimerosal (which has

been removed from routine childhood vaccines) as anything like a

smoking gun. " There's probably no one trigger that's causing autism

from the environmental side, " says Pessah, " and there's no one gene

that's causing it. "

Indeed, most researchers believe autism arises from a combination of

genetic vulnerabilities and environmental triggers. An identical twin

of a child with autism has a 60% to 90% chance of also being

affected. And there's little doubt that a vulnerability to ASD runs

in some families: the sibling of a child with autism has about a 10%

chance of having ASD. Gene scientists working on autism have found

suspicious spots on chromosomes 2, 5, 7, 11 and 17, but there are

probably dozens of genes at work. " We think there are a number of

different autisms, each of which could have a different cause and

different genes involved, " says Amaral, research director of

the MIND (Medical Investigation of Neurodevelopmental Disorders)

Institute, also at U.C. .

Amaral is heading MIND's efforts to assemble a database of clinical,

behavioral and genetic information on 1,800 autistic kids. One goal

is to clearly define autism subtypes. " It's hard to do the genetics

if you're talking about four or five different syndromes, " says NIMH

chief Insel. " Does the presence of seizures define a separate

illness? What about the kids who seem to develop normally for the

first year and a half and then regress--is that a separate thing? "

And what about the large number of autistic kids who have serious

gastrointestinal problems and the many with immune dysfunctions--are

they distinct subtypes?

Amaral and colleague Judy Van de Water believe they are onto a major

discovery about the origins of at least one type of autism--a

strongly familial variety. They have detected aberrant antibodies in

the blood of kids from families with a pattern of ASD and,

significantly, in mothers with more than one autistic child. " These

antibodies are actually raised against proteins in the fetal brain, "

says Amaral, who recently submitted a paper on the discovery. The

working hypothesis is that these antibodies may alter brain

development in ways that lead to autism. If correct, the finding

could lead to a maternal blood test and the use of a therapy called

plasmapheresis to clear antibodies from the mother's blood. " You get

a sense of the excitement, " says Amaral, " if you could prevent, say,

20% of kids from getting autism. But we don't want to raise false

hopes. "

THE AUTISTIC BRAIN

WHETHER THE CAUSE IS MATERNAL antibodies, heavy metals or something

else, there is no question that the brains of young children with

autism have unusual features. To begin with, they tend to be too big.

In studies based on magnetic resonance imaging (MRI) and basic tape-

measure readings, neuroscientist Courchesne at Children's

Hospital of San Diego showed that while children with autism are born

with ordinary-size brains, they experience a rapid expansion by age 2-

-particularly in the frontal lobes. By age 4, says Courchesne,

autistic children tend to have brains the size of a normal 13-year-

old. This aberrant growth is even more pronounced in girls, he says,

although for reasons that remain mysterious, only 1 out of 5 children

with autism is female. More recent studies by Amaral and others have

found that the amygdala, an area associated with social behavior, is

also oversize, a finding Amaral believes is related to the high

levels of anxiety seen in as many as 80% of people with autism.

Harvard pediatric neurologist Dr. Martha Herbert reported last year

that the excess white matter in autistic brains has a specific

distribution: local areas tend to be overconnected, while links

between more distant regions of the brain are weak. The brain's right

and left hemispheres are also poorly connected. It's as if there are

too many competing local services but no long distance.

This observation jibes neatly with imaging studies that look at live

brain activity in autistic people. Studies using functional MRI show

a lack of coordination among brain regions, says Marcel Just,

director of Carnegie Mellon's Center for Cognitive Brain Imaging in

Pittsburgh, Pa. Just has scanned dozens of 15- to 35-year-old

autistic people with IQs in the normal range, giving them thinking

tasks as he monitors their brain activity. " One thing you see, " says

Just, " is that [activity in] different areas is not going up and down

at the same time. There's a lack of synchronization, sort of like a

difference between a jam session and a string quartet. In autism,

each area does its own thing. "

What remains unclear is whether the interconnectivity problem is the

result of autism or its cause. Perhaps all that excess wiring is like

the extra blood vessels around the heart of a person who has suffered

a heart attack--the body's attempt to route around a problem. Or

perhaps the abnormal growth of the brain has to do with the immune

system; researchers at s Hopkins have found signs that autistic

brains have chronic inflammation. " It's impossible to tell the

chicken from the egg at this point, " Just says.

Autistic people have been shown to use their brains in unusual ways:

they memorize alphabet characters in a part of the brain that

ordinarily processes shapes. They tend to use the visual centers in

the back of the brain for tasks usually handled by the prefrontal

cortex. They often look at the mouth instead of the eyes of someone

who is speaking. Their focus, says psychologist Ami Klin of Yale's

Child Study Center, is " not on the social allegiances--for example,

the longing gaze of a mother--but physical allegiances--a mouth that

moves. "

Do these differences reflect fundamental pathology, or are they

downstream effects of some more basic problem? No one knows. But the

fact that early intervention brings better results for children with

ASD could be a clue that some of the odd brain anatomy and activity

are secondary--and perhaps even preventable. Studies that look at

whether early therapy might help normalize the brain are beginning at

York University in Toronto, but results are probably years away.

AUTISM FROM THE INSIDE

IN THE MEANTIME, 300,000 SCHOOL-AGE American children and many adults

are attempting to get through daily life with autism. The world has

tended to hear from those who are highest functioning, like Temple

Grandin, the author and Colorado State University professor of

livestock behavior known for designing humane slaughterhouses. But

the voices of those more severely affected are beginning to be heard

as well. Such was the case with Sue Rubin, 27, a college student from

Whittier, Calif., who has no functional speech and matches most

people's stereotyped image of a retarded person; yet she was able to

write the narration for the -nominated documentary about her

life, Autism Is a World.

What such individuals have to say about their experience is offering

new clues to their condition. It also conforms remarkably to what

scientists see inside their brains. By and large, people with ASD

have difficulty bringing different cognitive functions together in an

integrated way. There is a tendency to hyperfocus on detail and miss

the big picture. Coordinating volition with movement and sensation

can be difficult for some. Chandima Rajapatirana, an autistic writer

from Potomac, Md., offers this account: " Helplessly I sit while Mom

calls me to come. I know what I must do, but often I can't get up

until she says, 'Stand up,' " he writes. " [The] knack of knowing where

my body is does not come easy for me. Interestingly I do not know if

I am sitting or standing. I am not aware of my body unless it is

touching something ... Your hand on mine lets me know where my hand

is. Jarring my legs by walking tells me I am alive. "

Such descriptions shed light on seemingly self-destructive behavior

like biting, scratching, spinning and head banging. For people like

Rajapatirana, banging against a wall can be a useful way to tell,

quite literally, where their head is at. " Before we extinguish [such

behaviors], we need to understand what they are telling us, " writes

Judith Bluestone, a Seattle-based therapist who is autistic, in The

Fabric of Autism.

In his new book Send in the Idiots, British journalist Kamran Nazeer,

who is also autistic, describes the need for repetitive motions or

words as a search for " local coherence " in a world full of jarring

randomness. He also conveys the social difficulties: " Striking up

conversations with strangers, " he writes, " is an autistic person's

version of extreme sports. " Indeed, at a recent retreat for people

with ASD, attendees wore colored tags indicating their comfort level

with spontaneous conversation: red meant don't approach, yellow meant

talk if we've already met, green indicated, " I'd love to talk, but

I'm not good at initiating. "

Perhaps the worst fate for a person with ASD is to have a lively

intelligence trapped in a body that makes it difficult for others to

see that the lights are on. Neuroscientist Merzenich at the

University of California, San Francisco, studied an autistic boy who

is unable to speak or even sustain his attention to a task for more

than a few moments, and yet is aware of his condition and writes

remarkable poetry. How many other autistic kids, Merzenich

wonders, " are living in a well where no one can hear them " ?

Luckily for Hannah, her voice and thoughts are being heard. Since

learning to type, she has begun to speak a few words reliably--

" yes, " " no " and the key word " I " --to express her desires. All this

seems miraculous to her parents. " I was told to give up and get on

with my life, " says her mother. Now she and her husband are thinking

about saving for college.

—With reporting by With reporting by Dan Cray/Los Angeles