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“This
is not a rare disorder,” says Dr. Marie Bristol
Power of the National Institute of Child Health and Human
Development (NICHD). “It’s a pressing
public-health problem.”
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And a profound mystery. Nearly six decades
after autism was first formally recognized, the big
questions—What causes it? Can it be prevented or
cured?—are 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’s 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’s arm
to get a need met, but he (four out of five sufferers are
male) won’t 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—doorknobs, for
instance, or license plates—and 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. “It’s like ‘The 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. “It’s as if
someone has stolen into your house during the night and
left your child’s 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.
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| Advice
for Parents |
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Autism
is a lifelong condition, but early action
can make it less devastating |
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Get a diagnosis. If
you're concerned, see a doctor who's
familiar with autism. Don't assume the
child will catch up. |
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Get help. Special
schooling and speech therapy are often
critical. |
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Know your rights.
The government mandates services. Consult
the National Information Center for
Children and Youth With Disabilities
(nichcy.org/index.html). |
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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). |
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These
“little 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’s 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
“Asperger disorder” and “pervasive
development disorder” to describe mild variants of
autism. And as the umbrella expands, more and more people
are coming under it.
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Experts
now use terms like “Asperger disorder” and
“pervasive development disorder” to describe
mild variants of autism.
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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’t, 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’d left it. By
contrast, most autistic children thought she would look
in the box. They couldn’t see the world through
Sally’s eyes.
Autistic people can master
Sally-Anne scenarios with practice, but subtler
mind-reading tasks still stump them. They fail tests of
“second-order belief attribution.” (If Sally
watches John get a miscue about an object’s
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—a physicist, a computer scientist and
a mathematician—to match pictures of people’s
eyes to words like “grateful” or
“preoccupied.” They were lost. The clear
implication is that our brains are wired for certain
kinds of social awareness—and that this circuitry
can fail even as the rest of the organ thrives.
It’s not hard to see how
mindblindness would derail a person’s social
development. If you can’t perceive mental states,
you can’t show empathy, practice deceit or
distinguish a joke from a threat—let alone make
friends. Sharing becomes pointless when you can’t
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 “has
your name all over it,” he replies earnestly that he
can’t 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. “Will my son ever know what it feels like to
fall in love?” his mother asks. “What kind of
work will be available to him? Those are the questions I
ask myself.” |
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“Will
my son ever know what it feels like to fall in
love?” his mother asks. “What kind of work will
be available to him? Those are the questions I ask
myself.”
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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 “weak 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. “My concept of ships is linked to every
specific one I’ve ever known,” says Temple
Grandin, the autistic author and livestock scientist.
“There is a Queen Mary and a Titanic, but there is
no generic ‘ship’.”
Sometimes that’s just as
well. As the British psychologists Uta Frith and
Francesca Happe have shown recently, autistic
people’s blindness to contextual cues helps them
resist optical illusions. People with autism also have a
strong advantage on “embedded figures” tests,
which involve finding a simple shape hidden in a complex
design (graphic). And they’re masters at telling
similar objects apart. With prolonged exposure, anyone
starts noticing the uniqueness of things that look
identical at a glance; that’s why experienced bird
watchers are so good at spotting different subspecies of
warblers. People with autism don’t 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 “life-skills coordinator.” But his
love of letters—individual letters—has been a
lifeline. A local library has exhibited his calligraphy,
and he sometimes visits nursery schools to carve
children’s names from poster board for them. To earn
money, he sorts documents at Ortho-MacNeil
Pharmaceuticals. “My job,” he says, “is
getting along perfectly.” |
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“We’re
at a very primitive stage of research,”
— DAVID
AMARAL
neuroscientist |
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How do people end up this way? Why do their
minds exhibit these quirks? “We’re 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. “We don’t know
what causes autism, or which areas of the brain are most
affected.” Autopsies of autistic people have found
that cells in the “limbic” 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
“suggest 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’t 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’s 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 “hot
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. “Everyone agrees
there is a genetic predisposition,” says Bristol
Power of the NICHD. “The 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’s 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’s 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—an indication that the official estimates may
be low—but they found nothing in the landfill, the
water supply or the local river that looked like a
plausible culprit.
That isn’t to say toxic
substances are off the hook. Many of the babies exposed
prenatally to thalidomide during the late ’50s
suffered from autism as well as birth defects, and other
substances could turn out to have similar effects. Dr.
Eric Hollander of New York’s 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’s the technique at
Sacramento’s ABC School, a day school that boasts
four teachers to every five kids. Whatever the task at
hand— using words, recognizing facial
expressions—the 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,
“I 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. “But it’s hard here,” she says.
“Everything’s locked—even my room.”
Late last year the twins’ parents thought
they’d 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 “I want to go for a
walk” instead of banging his head in frustration.
Ian’s 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’t
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. “As a baby he was not loving or
responsive,” his mother, Cathy, recalls. “And
as he got older the tantrums got worse. Every
transition—bed to breakfast, home to school—was
a flash point.” When Jack started seeing caseworkers
at the Greenwich Autism Program last year, they
didn’t drill him on getting dressed. They helped
Cathy devise routines that would heighten his sense of
control—simple 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. “I feel like I have my kid back,” she
says. “A 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’re 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,
“a perfect victim” is surrounded by
“perfect 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—yet half of
those recognized earlier end up making the transition.
Until autism can be prevented or cured, that’s a
goal to strive for.
With
Donna Foote in Los Angeles and Heather Won Tesoriero in
New York
© 2000 Newsweek, Inc.
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