TIME: Inside the Autistic Mind

[Guest guest]

The autism issue mirrors ours in many ways ... I found this quote

from this week's Time on Autism very well put.

EXCERPT:

Indeed, most researchers believe autism arises from a combination of

genetic vulnerabilities and environmental triggers.

TIME: Inside the Autistic Mind

Sunday, May. 07, 2006

http://www.time.com/time/magazine/printout/0,8816,1191843,00.html

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

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:

â?¢ 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.

â?¢ 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.

â?¢ 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.

â?¢ 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.

â?¢ 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