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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