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标题: 美国新闻周刊专题报道“理解孤独症”(英文) [打印本页]

作者: 宁刚 时间: 2002-8-7 15:21
标题: 美国新闻周刊专题报道“理解孤独症”(英文)

                     Understanding Autism

   More kids than ever

   are facing the

   challenge of

   雖indblindness.?The

   causes are still a

   mystery, but research

   is offering new clues

   to how the brain

   works.

   Mysterious Combination: autistic

   tendencies in twins may shed

   light on autism's causes

                     By Geoffrey Cowley

                     NEWSWEEK

                              HE TOOK UP screaming instead of sleeping at night,

                     and almost any sensory stimulation, even the touch of clothing

                     against his skin, seemed to upset him. Russell抯 mother,

                     Janna, remembers carrying him upstairs for a bath one night

                     when he was 20 months old. When she called him her baby

                     boy, he said, 揑 not a baby桰 a big boy!?It was the last full

                     sentence he ever spoke.

                              In the years since, Janna and her husband, Rik, have

                     tried everything short of witchcraft to get their child back.

                     Russell follows a special diet and takes dozens of

                     supplements each day. He抯 had speech therapy and

                     behavioral therapy and made his way into special-ed classes

                     at a local elementary school. His parents are thrilled by his

                     progress棓Any little improvement is a victory,?Janna says.

                     But drop in as Russell gets home from school, and you see

                     what the family is up against. Pushing the door open, he flaps

                     his arms and makes a guttural sound before accepting a hug

                     from each parent. He doesn抰 seem to notice the stranger in

                     the room until his mom urges him to say hello. He honors the

                     request, yet his clear blue eyes reveal no hint of engagement.

                     揌e tests in the normal range for intelligence,?his dad says.

                     揃ut he can抰 tell me how his day was, or what hurts.?
   Any little

   improvement is a

   victory,?
   ?JANNA

                              People like Russell are not as rare as you抎 think.

                     Autism stalks every sector of society, and its recognized

                     incidence is exploding. In California, the number of kids

                     receiving state services for autistic disorders has nearly

                     quadrupled since 1987, rising 15 percent in the past three

                     months alone. Nationally, the demand for such services rose

                     by 556 percent during the ?0s. Some experts see a

                     growing epidemic in these numbers, while others believe

                     they reflect new awareness of an existing problem. Either

                     way, autism is now thought to affect one person in 500,

                     making it more common than Down syndrome or childhood

                     cancer. 揟his is not a rare disorder,?says Dr. Marie Bristol

                     Power of the National Institute of Child Health and Human

                     Development (NICHD). 揑t抯 a pressing public-health

                     problem.?
   This is not a rare

   disorder,?says Dr.

   Marie Bristol

   Power of the

   National Institute

   of Child Health

   and Human

   Development

   (NICHD). 揑t抯 a

   pressing

   public-health

   problem.?

                              And a profound mystery. Nearly six decades after

                     autism was first formally recognized, the big

                     questions梂hat causes it? Can it be prevented or

                     cured?梐re still wide open. But the pace of discovery is

                     accelerating. Scientists are gaining tantalizing insights into the

                     autistic mind, with its odd capacity for genius as well as

                     detachment. And though the suspected causes range from

                     genetic mutations to viruses and toxic chemicals, we now

                     know it抯 a brain-based developmental disorder and not a

                     result of poor parenting (accepted wisdom as recently as

                     the 1970s). The condition may never be eradicated, but

                     science is making autistic life more livable, and enriching our

                     whole understanding of the mind.

                              Until fairly recently, neuroscientists thought of autism

                     as a single, utterly debilitating condition. Like Russell,

                     people with the classic form of the condition lack normal

                     language ability, and they seem devoid of social impulses. A

                     classically autistic child may tug on someone抯 arm to get a

                     need met, but he (four out of five sufferers are male) won抰

                     spontaneously play peekaboo or share his delight in a toy.

                     Nor will he engage in pretend play, using a banana, say, as

                     a pistol or a telephone. What he will do is fixate on a pet

                     interest梔oorknobs, for instance, or license plates梐nd

                     resist any change in routine. A new route to the grocery

                     store can spark a major tantrum. Three out of four

                     classically autistic people are thought to be mentally

                     retarded. A third suffer from epilepsy, and most end up in

                     institutions by the age of 13. 揑t抯 like 慣he Village of the

                     Damned??says Portia Iverson, cofounder of the activist

                     group Cure Autism Now and mother of an autistic

                     8-year-old named Dov. 揑t抯 as if someone has stolen into

                     your house during the night and left your child抯 bewildered

                     body behind.?
                              As it turns out, though, autism has more than one face.

                     During the 1940s, a Viennese pediatrician named Hans

                     Asperger described a series of young patients who were

                     somewhat autistic but still capable of functioning at a fairly

                     high level.

                     Advice for Parents

                        Autism is a lifelong condition, but early action

                        can make it less devastating

                        ?
                        Get a diagnosis. If you're concerned, see a doctor

                        who's familiar with autism. Don't assume the child will

                        catch up.

                        ?
                        Get help. Special schooling and speech therapy are

                        often critical.

                        ?
                        Know your rights. The government mandates services.


Consult the National Information Center for Children

                        and Youth With Disabilities (nichcy.org/index.html).

                        ?
                        Seek support. Resources include the National Alliance

                        for Autism Research (naar.org), the Autism Society of

                        America (autism-society.org), Autism Resources

                        (autism-info.com) and Families for the Early Treatment

                        ofAutism (feat.org).

                     Newsweek

                     These 搇ittle professors?had quick tongues and sharp

                     minds. They might stand too close and speak in loud

                     monotones, but they could hold forth eloquently on their pet

                     interests. Asperger抯 work went unread in the

                     English-speaking world for several decades, but its

                     rediscovery in the early 1980s started a revolution that is

                     still unfolding. Experts now use terms like 揂sperger

                     disorder?and 損ervasive development disorder?to describe

                     mild variants of autism. And as the umbrella expands, more

                     and more people are coming under it.

   Experts now use

   terms like

   Asperger

   disorder?and

   pervasive

   development

   disorder?to

   describe mild

   variants of autism.

                              What, ultimately, makes autistic people different? How

                     do they experience the world? Twenty years ago no one

                     had much of a clue. But a burgeoning body of research now

                     suggests that the core of all autism is a syndrome known as

                     mindblindness. For most of us, mind reading comes as

                     naturally as walking or chewing. We readily deduce what

                     other people know and what they don抰, and we understand

                     implicitly that thoughts and feelings are revealed in gestures,

                     facial expressions and tone of voice. An autistic person may

                     sense none of this. In one of the first studies to highlight this

                     issue, researchers quizzed children about a scenario in

                     which a girl named Sally places a marble in a covered

                     basket and leaves the room. While Sally is out, her friend

                     Anne moves the marble from the basket into a nearby

                     covered box. When asked where Sally would later look for

                     her marble, even retarded children knew she would expect

                     to find it where she抎 left it. By contrast, most autistic

                     children thought she would look in the box. They couldn抰

                     see the world through Sally抯 eyes.

                              Autistic people can master Sally-Anne scenarios with

                     practice, but subtler mind-reading tasks still stump them.

                     They fail tests of 搒econd-order belief attribution.?(If Sally

                     watches John get a miscue about an object抯 location,

                     where will she expect him to look for it?) And even the

                     most brilliant Asperger sufferers are easily flummoxed by

                     facial expressions. In one recent study, Cambridge

                     University psychologist Simon Baron-Cohen asked three of

                     them梐 physicist, a computer scientist and a

                     mathematician梩o match pictures of people抯 eyes to

                     words like 揼rateful?or 損reoccupied.?They were lost. The

                     clear implication is that our brains are wired for certain

                     kinds of social awareness梐nd that this circuitry can fail

                     even as the rest of the organ thrives.

                              It抯 not hard to see how mindblindness would derail a

                     person抯 social development. If you can抰 perceive mental

                     states, you can抰 show empathy, practice deceit or

                     distinguish a joke from a threat條et alone make friends.

                     Sharing becomes pointless when you can抰 see its effects on

                     people, and conversation loses much of its meaning because

                     you miss the unspoken intentions that hold it together.

                              Ten-year-old Jace Covert of Sagaponack, N.Y., is

                     always falling into that trap. When an adult friend buys him a

                     cookie, saying it 揾as your name all over it,?he replies

                     earnestly that he can抰 see it there. Jace is not autistic in the

                     way that Russell Rollens is. Jace spent several years in a

                     mainstream private school and kept up with the curriculum.

                     But his social ineptitude made him a magnet for ridicule.

                     Lacking the tools to deflect it, he resorted to hitting, and the

                     school eased him out. Jace is now thriving in public school

                     with the help of a social-skills program, but his prospects

                     are hard to gauge. 揥ill my son ever know what it feels like

                     to fall in love??his mother asks. 揥hat kind of work will be

                     available to him? Those are the questions I ask myself.?
   Will my son ever

   know what it feels

   like to fall in

   love??his mother

   asks. 揥hat kind

   of work will be

   available to him?

   Those are the

   questions I ask

   myself.?

                              Romance is predictably difficult for autistic people, but

                     many do brilliantly in certain lines of work. Only rarely does

                     an autistic savant come along who can memorize a phone

                     book in 10 minutes or measure the exact height of a building

                     by glancing at it. But one autistic person in 10 shows

                     exceptional skill in areas such as art, music, calculation or

                     memory. And because they share a cognitive style known

                     as 搘eak central coherence,?they consistently excel on

                     certain mental tasks. Whereas most of us use context and

                     categories to sort our perceptions, people with autism tend

                     to view the world as an array of discrete particulars. 揗y

                     concept of ships is linked to every specific one I抳e ever

                     known,?says Temple Grandin, the autistic author and

                     livestock scientist. 揟here is a Queen Mary and a Titanic,

                     but there is no generic 憇hip??
                              Sometimes that抯 just as well. As the British

                     psychologists Uta Frith and Francesca Happe have shown

                     recently, autistic people抯 blindness to contextual cues helps

                     them resist optical illusions. People with autism also have a

                     strong advantage on 揺mbedded figures?tests, which

                     involve finding a simple shape hidden in a complex design

                     (graphic). And they抮e masters at telling similar objects

                     apart. With prolonged exposure, anyone starts noticing the

                     uniqueness of things that look identical at a glance; that抯

                     why experienced bird watchers are so good at spotting

                     different subspecies of warblers. People with autism don抰

                     experience this effect. Where others see forests, they see

                     trees from the start.

                              People can build lives around these talents.

                     Thirty-one-year-old Eric Spencer of Flemington, N.J.,

                     started reading when he was 18 months old. His autism has

                     always confined him to well-controlled environments; he

                     lives near his parents, aided by a 搇ife-skills coordinator.?
                     But his love of letters梚ndividual letters梙as been a

                     lifeline. A local library has exhibited his calligraphy, and he

                     sometimes visits nursery schools to carve children抯 names

                     from poster board for them. To earn money, he sorts

                     documents at Ortho-MacNeil Pharmaceuticals. 揗y job,?
                     he says, 搃s getting along perfectly.?
We抮e at a very

   primitive stage of

   research,?
   ?DAVID AMARAL

   neuroscientist

                              How do people end up this way? Why do their minds

                     exhibit these quirks? 揥e抮e at a very primitive stage of

                     research,?says David Amaral, a neuroscientist at the

                     University of California, Davis, and research director at the

                     MIND Institute, which just received $34 million in state

                     funding to study autism and other neurological disorders.

                     揥e don抰 know what causes autism, or which areas of the

                     brain are most affected.?Autopsies of autistic people have

                     found that cells in the 搇imbic?regions that mediate social

                     behavior are often small and densely packed, suggesting

                     their early development was interrupted. And

                     neural-imaging studies are showing differences in how

                     autistic and nonautistic brains respond to social cues, such

                     as faces or eyes. Researchers at Stanford are now launching

                     a multicenter study to identify the most salient ones and

                     assess their significance.

                              Other scientists are zeroing in on possible differences

                     in brain chemistry. This spring, in a preliminary study, a team

                     led by Dr. Karin Nelson of the National Institutes of Health

                     discovered what may be a chemical marker for autism. The

                     researchers identified 246 teenagers whose blood had been

                     sampled at birth as part of the California Newborn

                     Screening Program. Some of the teens were healthy, while

                     others suffered from autism, cerebral palsy or mental

                     retardation. And when the scientists examined their early

                     blood samples, those from the autistic or retarded kids

                     showed high levels of four proteins involved in brain

                     development (VIP, CGRP, BDNF and NT4). The findings

                     搒uggest that some abnormal process is already underway

                     at birth,?says Dr. Judith Grether, a California

                     epidemiologist who coauthored the study. If further research

                     confirms the pattern, we may someday be able to test

                     prenatally for autism.

                              Unfortunately, we still won抰 know what precipitates

                     the condition. There is no question that heredity leaves some

                     people susceptible. Roughly 5 percent of kids with autistic

                     siblings have autistic disorders themselves (that抯 about 25

                     times the usual rate). And the risk of autism is 75 percent

                     (375 times higher than usual) among people with affected

                     identical twins. Researchers are studying 揾ot spots?on

                     several chromosomes that could harbor culpable genes, but

                     none of those regions has been linked consistently to the

                     disorder. Experts assume the problem stems not from a

                     single gene but from 10 or more that occur in various

                     combinations. 揈veryone agrees there is a genetic

                     predisposition,?says Bristol Power of the NICHD. 揟he

                     question is: what triggers the condition in people who are

                     predisposed??
                              This is where things get murky. Some activists,

                     including Rik and Janna Rollens, fear that childhood

                     vaccines may trigger autistic disorders in susceptible kids.

                     Others suspect that toxic substances are somehow to

                     blame. Bobbie and Billy Gallagher started to wonder about

                     environmental hazards several years ago, after two of their

                     three kids were diagnosed as autistic. The Gallaghers live in

                     Brick Township, N.J., a working-class town with a

                     well-known toxic landfill. And when they sought out other

                     afflicted kids, they were surprised to find 44 of them among

                     Brick抯 71,000 residents. Two years ago they demanded an

                     inquiry, and they got one. In a report released this spring,

                     federal investigators concluded that Brick抯 rate of autistic

                     disorders was three times the 1 in 500 usually cited as the

                     norm. They noted that small, intensive studies often find

                     rates this high梐n indication that the official estimates may

                     be low梑ut they found nothing in the landfill, the water

                     supply or the local river that looked like a plausible culprit.

                              That isn抰 to say toxic substances are off the hook.

                     Many of the babies exposed prenatally to thalidomide

                     during the late ?0s suffered from autism as well as birth

                     defects, and other substances could turn out to have similar

                     effects. Dr. Eric Hollander of New York抯 Mount Sinai

                     School of Medicine noticed several years ago that 60

                     percent of the autistic patients in his clinic had been exposed

                     in the womb to pitocin, the synthetic version of a brain

                     chemical (oxytocin) that helps induce labor. That could be

                     significant, since only 20 percent of all births are assisted by

                     pitocin. Or it could be a meaningless coincidence. In the

                     hope of finding out, Hollander is now tracking 58,000 kids

                     whose mothers?treatments were monitored during

                     pregnancy.

                              Until we know how to prevent autistic disorders, the

                     challenge will be to help people compensate for them. The

                     parents of autistic kids often swear by unconventional

                     remedies (secretin, facilitated communication, auditory

                     integration, special diets), but the benefits are unproven at

                     best. Tranquilizers and antidepressants can help ease the

                     anxiety and compulsiveness that autism causes, and

                     stimulants such as Ritalin can help affected kids shift their

                     attention more easily. But no medication can correct the

                     disorder itself, and none is likely to take the place of

                     intensive schooling.

                              The standard approach, known as Applied Behavioral

                     Analysis (ABA), involves conditioning kids through constant

                     reinforcement to behave appropriately. That抯 the technique

                     at Sacramento抯 ABC School, a day school that boasts four

                     teachers to every five kids. Whatever the task at hand?
                     using words, recognizing facial expressions梩he teachers

                     break it into discrete units and drill the kids repeatedly.

                     Every success earns a token, and six tokens earn a cookie.

                     To help nonverbal kids communicate, teachers give them

                     notebooks filled with icons. When 4-year-old Chris hands

                     teacher Jessica the icon for cheese, she gives him a piece

                     and says, 揑 want cheese,?linking the phrase with the

                     reward. Over time, 70 percent of the kids using this Picture

                     Exchange Communication System (PECS) learn to make

                     simple utterances.

                              These routines are a godsend for kids like Kyle and

                     Ian Brown of Long Beach, Calif. The 8-year-old twins have

                     never been easy. They climb furniture, leap from stairways

                     and scale six-foot fences. Ian once made his way onto the

                     nearby freeway. Lauren, their 9-year-old sister, displays

                     only fondness as Kyle slaps his cheek rhythmically and Ian

                     circles the kitchen table, clicking his tongue as he tries to

                     snatch a can of soda. 揃ut it抯 hard here,?she says.

                     揈verything抯 locked梕ven my room.?Late last year the

                     twins?parents thought they抎 have to place them in an

                     institution. But when an ABA-oriented school opened in

                     Huntington Beach, they signed the boys up. Six months later

                     both are starting to brush their teeth and dress themselves,

                     and Kyle is saying things like 揑 want to go for a walk?
                     instead of banging his head in frustration. Ian抯 language is

                     limited to mimicking words, but he uses PECS to express

                     needs. Dinners out are still unthinkable. But now, so is

                     sending them away.

                              The ABA approach isn抰 right for everyone. Educators

                     can often help higher-functioning kids build on their own

                     skills and interests. Six-year-old Jack Guild of Greenwich,

                     Conn., can be hard to reach, even though he has no trouble

                     with language. 揂s a baby he was not loving or responsive,?
                     his mother, Cathy, recalls. 揂nd as he got older the

                     tantrums got worse. Every transition梑ed to breakfast,

                     home to school梬as a flash point.?When Jack started

                     seeing caseworkers at the Greenwich Autism Program last

                     year, they didn抰 drill him on getting dressed. They helped

                     Cathy devise routines that would heighten his sense of

                     control梥imple things like letting him finish a favorite video

                     in the morning, then driving him to school instead of coaxing

                     him to walk. The results have been dramatic. 揑 feel like I

                     have my kid back,?she says. 揂 kid who can learn and

                     develop.?
                              As different as they sound, both strategies rest on an

                     understanding that autistic kids are not willfully misbehaving,

                     just trying to navigate a world they抮e not equipped to

                     fathom. As Dr. Fred Volkmar of Yale wrote recently, the

                     worst possible fate for such a child is to be placed in a

                     program for troublemakers. When that happens, he says, 揳

                     perfect victim?is surrounded by 損erfect victimizers.?If the

                     new autism awareness accomplishes nothing else, it should

                     spare many children that fate. With luck, it will also get them

                     recognized early, when special interventions can still help.

                     Only 10 percent of the autistic children entering the

                     celebrated Princeton Child Development Center after age 5

                     go on to enter mainstream schools梱et half of those

                     recognized earlier end up making the transition. Until autism

                     can be prevented or cured, that抯 a goal to strive for.

                     With Donna Foote in Los Angeles and Heather Won

                     Tesoriero in New York

Reprinted with permission from ?2000 Newsweek, Inc.

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