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.
Russells 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, I not a
babyI 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. Hes 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 progressAny 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 doesnt 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. He tests in the normal range for intelligence, his dad says. But he cant tell me how his day was, or what hurts.
little improvement is a victory,
|People like Russell are not as rare as youd 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 90s. 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. This is not a rare disorder, says Dr. Marie Bristol Power of the National Institute of Child Health and Human Development (NICHD). Its a pressing public-health problem.|
is not a rare disorder, says Dr. Marie Bristol
Power of the National Institute of Child Health and Human
Development (NICHD). Its a pressing
And a profound mystery. Nearly six decades
after autism was first formally recognized, the big
questionsWhat 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 its 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 someones arm to get a need met, but he (four out of five sufferers are male) wont 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 interestdoorknobs, for instance, or license platesand 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. Its 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. Its as if someone has stolen into your house during the night and left your childs 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.
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. Aspergers 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.
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
dont, 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 shed left it. By
contrast, most autistic children thought she would look
in the box. They couldnt see the world through
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 objects 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 thema physicist, a computer scientist and a mathematicianto match pictures of peoples eyes to words like grateful or preoccupied. They were lost. The clear implication is that our brains are wired for certain kinds of social awarenessand that this circuitry can fail even as the rest of the organ thrives.
Its not hard to see how mindblindness would derail a persons social development. If you cant perceive mental states, you cant show empathy, practice deceit or distinguish a joke from a threatlet alone make friends. Sharing becomes pointless when you cant 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 cant 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.
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
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 Ive 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 thats just as well. As the British psychologists Uta Frith and Francesca Happe have shown recently, autistic peoples 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 theyre masters at telling similar objects apart. With prolonged exposure, anyone starts noticing the uniqueness of things that look identical at a glance; thats why experienced bird watchers are so good at spotting different subspecies of warblers. People with autism dont 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 lettersindividual lettershas been a lifeline. A local library has exhibited his calligraphy, and he sometimes visits nursery schools to carve childrens names from poster board for them. To earn money, he sorts documents at Ortho-MacNeil Pharmaceuticals. My job, he says, is getting along perfectly.
at a very primitive stage of research,
How do people end up this way? Why do their
minds exhibit these quirks? Were 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 dont 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.
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.
Donna Foote in Los Angeles and Heather Won Tesoriero in
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