More kids than ever challenge of mindblindness. The causes are still a mystery, but research is offering new clues to how the brain works. Russell Kollens’s life was off to a strong start nine years ago. Gestation and livery went smoothly, and lie hit all the early childhood milestones right on schedule. Snapshots from his 1st birthday show beaming as he has serenaded by waitresses in a
People like Russell are not as rare as you'd think. Autism stalks every sector of society, and its recognized incidence is exploding. In
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 Aisdom 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. 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.
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 gets 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,
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
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
Sometimes that's just as well. As the British psychologists Uta Frith and Francesca Haspe 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
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
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
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 consistenly 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 guestion 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
That isn't to say toxic substances are off the hook. Many of the babies exposed prenatally to thalidomide during the late 1950s suffered from autism as well as birth defects, and other substances could turn out to have similar effects. Dr. Eric Hollander of
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
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
The
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 Volkimar 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
HOW DOCTORS DIAGNOSE AUTISM
Thanks to a simple screening test called CHAT (Checklist for Autism in Toddlers), a pediatrician can spot autistic disorders in children as young as 18 months. Some experts believe all kids should receive it.
DIAGNOSIS
A child who fails to accomplish each of the following five measures almost certainly has classic autism.
QUESTIONS FOR PARENTS:
1. Does your child ever pretend, for example, to make a cup of tea using a
toy cup and teapot, or pretend other things?
2. Does your child ever use his index finger to point, indicating interest in
something?
EXERCISES FOR THE CHILD
3. Get the child's attention, then point across the room at an interesting
object and say, Oh, look! There's a name of the object. Watch the
child's face. Does the child look to see what you are pointing at?
4. Get the child's attention, then give the child a miniature toy cup and
teapot and say, Can you make a cup of tea? Does the child pretend to
pour out tea, drink it, etc.?
5. Say, Where's the light? Does the child point with his index finger at the
light ?
WHAT HAPPEN IN THE BRAIN
Imaging studies suggest that autistic people differ from non autistic people in the way their brains respond to the sight of a human face.
NORMAL BRAIN
The sight of a face activates the fusiform gyrus, a tiny region of the cerebral cortex.
AUTISTIC BRAIN
Facial images are processed in a region typically used for perceiving inanimate objects.
THE GIFTS
Asked to compare the two inner dots, most people perceive the one on the right as larger. Autistic people aren't fooled by context. They see the two dots as equal.
Finding needles in haystacks
Can you find the triangle in the carriage? The cross in the thatched design? Both are present in the sizes and positions shown. These embedded figures tasks are hard for most people; we're too focused on forests to see every tree. Autistic people have a more piecemeal style of perception. As a result, they excel in this type of task.
AND HOW AUTISTIC PEOPLE EXPERIENCE THE WORLD
Autistic people have extreme difficulty perceiving, or even inferring, other people's thoughts, feelings and intentions. In fact, autism is sometimes described as mindblindness. Yet the condition is more than a disability. Autistic people excel at certain tasks.
THE IMPAIRMENTS
Perceiving mental states
1. Sally puts her marble in the basket, replaces the lid and leaves the
room
2. While Sally is gone, her friend Anne takes the marble out of the basket,
moves it into the covered box and replaces both of the lids.
3. When Sally comes back into the room, the two containers look just the
way she left them. Where do you think she will look for her marble?
A normal four year old easily discerns that Sally will expect to find the marble in the basket where she left it. Looking at the same scene, autistic children tend to predict that she will look in the box, since that's where it is. They can't see things from Sally's perspective.
Reading the language of the eyes
Normal adults have little trouble choosing the one word that best describes the attitude expressed in each pair of eyes. In recent studies, researchers have shown that autistic people find the task very difficult. Even mildly autistic adults who excel at math, physics or computer science are often flummoxed by this test.
The day Jymmy was diagnosed with autism I foresaw my little boy grown up, 40 or 50 years old, locked in a state hospital, being beaten by a minimum wage untrained aide, unable to defend himself or to tell anyone what was happening. I thought: I will kill Jimmy and my self He has no future, and neither do I.
I don't remember how long it took me to abandon this deeply wrong vision of my son and his life. Probably only minutes. We had no choice but to get to work on the future. The trouble was, we'd been in denial; we'd been thinking Jimmy was going to get better. Now that wished-for future was gone. What would we put in its place?
I knew in my bones what Jimmy needed: a happy mother who loved him. Jimmy needed, he deserved, a family as happy as any other child's. But it wasn't going to be easy. Early on I came across a study comparing parents of children who were dying to parents of children with autism. The autism parents were more depressed.
I didn't care. I decided that for us happy family meant integrated family: Jiminy would be part of the world. So Jimmy, now 13, a screaming, fighting, running away kind of boy in his early years, went to restaurants with us, traveled on airplanes, visited our friends. He wasn't allowed to run wild in these places, which meant we were struggling virtually around the clock. We got better at this, and eventually learned to establish some control more quickly and quietly. But it never got easy.
Jimmy didn't sleep, either. We would fall into bed exhausted whenever Jimmy was finally able to drop off as late as 10, 11, 12 and four nights out of seven he would be up again at 3, screaming. We didn't know why, and he couldn't tell us.
For Ed and me, happy family meant brothers and sisters, and that was another struggle. And then suddenly I was pregnant with twins. The genetic counselors we'd consulted had told us they'd never seen a family with more than one case of autism, so I thought twins would give us two neuro typical children who could love and support each other as they assumed responsibility for Jimmy after we were gone.
But the counselors were wrong. We worried about Andrew from birth. Sometime later, after we'd recovered a bit from our second diagnosis, a friend said, You're like the Kennedys, onlv not famous, Also not rich; l said.
So two children with autism. My husband and I careered from one cal amity to another. There were the assessments, the doctors, the specialed functionaries. In so many ways, being forced to retrace our steps through the gateways of special needs has been the worst of it. Why should Andrew go through this? Why should we?
And yet and yet, in the midst of all this, we have become the happy family we set out to be. Not long ago Andrew went on a surface-clearing spree, systematically taking all of our family photos, books and lamps from their tables and placing them carefully on the floor. That night Ed and I were relaxing on our big bed together reminiscing. Remember when Jiminy did that? we said to each other. It was a happy memory.
We have Christopher, too, who seems to have inherited virtually none of his brothers' quirks. He is a sweet boy, already more sensitive than other 5 year olds. These days its possible I worry more about his future than I do Jimmy's or Andrews. I don't see Christopher crouched in the corner of a state hospital; I see him trapped in the lobby, arguing with bureaucrats about his brothers' care.
I hope Christopher will discover, after we are gone, how to take all the craziness that is our life and make it into his own kind of life: his own kind of happy life. Because down the road everything will rest on his sturdy little shoulders. We hope he'll find the way to wear it lightly,
PARENTS WONDER IS IT SAFE TO VACCINATE ?
Many families of autistic kids blame the MMR shot for the disorder, experts say they shouldn't. The story is ominously familiar to anyone interested in autism. A child who seems to be developing normally visits the doctor shortly after his 1st birthday to get the MMR (measles/mumps/rubella) vaccine. Pretty soon, the parents start to wonder about him. Why isn't he talking yet? Why is he so fussy? Why so detached and unresponsive?
When the child is diagnosed as autistic, the question is inescapable: was it the vaccine? The notion that childhood vaccinations cause autism has recently sparked intense controversy. In
The current brouhaha started two years ago, when Dr. Andrew Wakefield of the
It also inspired further research. In a study published last year, researchers led by Dr. Brent Taylor of the of Royal Free Hospital reviewed autism rates in eight British health districts over a 13 year period to see if they had spiked following introduction of the MMR vaccine in 1988. They hadn't. And once MMR was available, kids who got the vaccine exhibited no more autism than those who didn't. If such an association occurs, the re-searchers concluded, it is so rare that it could not be identified in this large regional sample. An expert panel convened by
.
.
.
No comments:
Post a Comment