Time Magazine May 15 2006 Article

[Guest guest]

> 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:

>

> -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. 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.

>

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