Advice to Parents
The Big Story
Research Still Primitive What is
the Autistic Experience?
Interview with Temple
Grandin Temple Takes Your Calls
Mysterious Combination: autistic
tendencies in twins may shed light on autism's causes
By Geoffrey Cowley NEWSWEEK July 23
— Russell Rollens’s life was off to a strong
start nine years ago. Gestation and delivery went smoothly, and he hit all
the early-childhood milestones right on schedule. Snapshots from his 1st birthday
show him beaming as he’s serenaded by waitresses in a Sacramento, Calif.,
Spaghetti Restaurant. But Russell’s grandparents noticed he was less responsive
when they visited not long afterward, and at 18 months things got really worrisome.
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’s 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 baby—I 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’s 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—”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’t 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 can’t 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’d 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, (in
2004, estimated at 1 in 200 )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). “It’s a pressing public-health problem.”
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.
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 “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. 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’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.” “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.”
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.”
“We’re at
a very primitive stage of research,”
— DAVID AMARAL neuroscientist
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.
Q&A:
Temple Grandin
An interview with the autistic author and scientist
NEWSWEEK WEB EXCLUSIVE
July 22 — Temple Grandin, 53, is
a designer of live stock handling facilities, an Assistant
Professor of Animal Science at Colorado State University,
and a celebrated writer and speaker. She is also autistic.
Grandin, aged 53, was diagnosed with autism at age 2 1/2.
But as a result of early intervention, she has managed to
obtain a PHD, run a business, and travel the world lecturing
on animal issues as well as autism. She has written over 300
articles on animal handling, welfare, and facility design.
Her most recent book is “Thinking in Pictures and Other
reports From MY life with Autism.”
Donna: When did you first realize that you think
differently?
Temple: When I was a child, I thought everybody thought in pictures. I didn’t
know that my thinking was different. So I had the first inklings of it when
I was in college and I read an article about the cave men that said man could
not have invented tools until he had language. And I just thought, “That’s
B.S.” You don’t need language to figure out how to make tools.
I mean, I don’t use language. I just see things in my head. So that
was sort of my first little insight that maybe the way that I think is different.
Describe the emotional life of a person with autism.
Autistic people have emotions, but they’re much more in the present.
You know, my main emotion is fear. I get scared real easily. And then I can
get angry easily. I can also be happy. But it’s happy like a little
kid. It’s like my life is intellectually complex but emotionally simple.
How old were you when you were diagnosed with autism?
“When I was a child, I thought everybody thought in pictures. I didn’t
know that my thinking was different.”
tWell, by the time I was two and a half years old my parents realized I had
lots of problems. I had no speech. I had constant tantrums. I wasn’t
developing like the little girl next door.
What kind of problems did you have?
One of the problems I had as a little kid is when adults spoke directly to
me I understood what they said, but when grown-ups talked really fast it went
into a kind of gibberish. Because even though my hearing tested out just fine,
my brain wasn’t hearing all of the complex speech sounds, especially
hard consonants.
What about sensory deficits?
One of the problems that autistic kids have is that certain sounds and touches
hurt. If there was just too much noise around I just couldn’t stand
it. I would just cry. Like when the school bell went off it was like a dentist
drill hitting a nerve, except that nerve was down my ear. And some of the
kids that have more severe problems, they go into Wal-Mart and they just go
bananas and start screaming because it just hurts. They feel like they’re
inside the light show and inside the rock n’roll speaker. I also had
a lot of problems with touch sensitivity. I still cannot stand wearing wool
against my skin. I couldn’t stand to be hugged. It was just too much;
an overwhelming tidal wave of stimulation. I wanted to feel that good feeling,
but it was just, you know, too much, too overwhelming.I would pull away. Just
stiffen up and pull away.
How did you deal with the pain?
I would sometimes just retreat from the world and sit and dribble sand through
my hands. And when I did this I could just shut out the whole world. It was
like turning my ears off. When I really got into that, it was like getting
high on a drug. It was this absolute total tune-out, getting high. It was
just terrible.
How do you think?
I think in pictures. They flash up in my brain like slides. They start out
as slides and then they turn from slides into a video. Well, the way I think,
the way my mind works, it’s just like having my own internal Web browser.
I just, you know, put in key words and I pull up information-just like putting
words into a Web browser. And I can jump from association to association.
But what I pull up is all visual. If I can’t convert something to a
picture I don’t remember it well.
Do you ever go to parties?
No.
Have you ever fallen in love?
Nope. There are some things I just don’t do.
And does that make you sad?
I keep myself too busy to get sad. I find it’s very important to keep
very busy.Or I can get depressed. I’ve just got to always have, you
know, something to do.
What about social skills?
Well I have to just learn social stuff like an actor rehearses for a play.One
of the things I never understood until about five years ago us that people
have these little eye signals where they can communicate with each other.
My teenage years, that was a sad scene.
I just didn’t get along socially. I did not participate in the teen
social scene. The teasing was absolutely, totally awful. I’d walk across
the parking lot and they’d go, “Tape recorder.” Well, the
thing is, is that a person with autism learned things at first by rote. So
a lot of my speech did sound like a tape recorder. It was just... it was terrible.
I started having terrible nerves. Oh, I had colitis attacks. I had, you know,
butterflies in my stomach. I sweated. I had problems with swallowing food.
Oh, it was dreadful. I had heart palpitations.And for twenty years I tried
to figure out the deep dark secret that made me nervous. And then one day
I discovered antidepressant drugs.And within three days the nerves didn’t
go completely away, but almost away.
Now, were the nerves due to autism?
Oh, absolutely. Absolutely. Absolutely. It’s biology and it’s
due to immature development in the nervous system.
You seem to have a real affinity for animals.
Well, I think the thing that helps me with understanding animals is I believe
the way I think and feel is more like an animal. You see, all this anxiety
that I had... You know, there are some breeds of cattle that are really nervous,
and any little sight or sound makes them jump. So what is being a high-strung,
nervous animal? It’s sensitivity to things like rapid movement and high-pitched
intermittent sounds. And those are the same things I’m sensitive to.
Also, animals are not verbal thinkers; they’re going to be visual thinkers.I
have the nervous system of an animal.
You have PHD, you are a designer of livestock equipment and a published
author and lecturer. How did you overcome all the obstacles presented by autism?
Back in the fifties the response was : “Put them in an institution.”
But my mother was not going to do that. She found a really good speech therapist
that spent hours working with me one-on-one. I was in very excellent early
intervention by the time I was two and a half years old. My days were very
structured.I was not allowed to sit in a corner and rock. One of the ways
I think I have compensated is by a tremendous amount of just learning. I’ve
just crammed alot onto my hard drive. It’s just putting lots and lots
of information in my mind so I know how to behave in different situations.
What about your IQ? Was it ever tested?:
Yes, it was. It was 137 when I was in elementary school.
And you had no trouble getting into college and getting a PHD?
Well, I didn’t have the greatest SAT scores. But I went to Franklin
Pierce College in New Hampshire, and they were willing to just give me a chance
because they could see that I had some talents.
How does autism limit your life today?
The one problem I still have is I cannot multi-task. I don’t think it’s
safe for me to be using a cell phone in the car. And I’m not good at
debating. It takes me too long to download my memory files. When I talk about
my work or autism, it’s just a tape recorded download. I just pull the
information out of the audio files in my brain and blab it out. But if I’m
in a new situation with new information, I have to make pictures. It’s
like I see the video tape in my head and then my voice narrates the slide
show.
Would you say that you’re happy and satisfied?
Yeah. Yes, I am. Now with medication I’ve got my nerves pretty well
under control, you know, and that’s helped my health a whole lot. I’ve
done alot of constructive things with my life.
© 2000 Newsweek, Inc.
How
Autistic People Experience the World
NEWSWEEK
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 number of reported cases of autism, a mysterious disease
that causes pain in millions of American families, is on the rise. In the
90's, the national demand for autism services rose 556 percent.
Whether autism itself is becoming more common or families
are becoming more aware of autistic symptoms is unclear. What is clear is
that this devastating disease remains largely a mystery. Geoffrey Cowley writes
this week on the frustration and hurt autistic people suffer and on new advances
in our understanding of the disease. He'll answer questions on those topics
in a live talk on Wednesday, July 26. Cowley will be joined by Temple Grandin,
a published author who suffers from autism. She'll answer questions on what
kind of options exist today for people with autism. Read the transcript below.
Senior Editor Geoffrey Cowley, the author of our story
this week on autism, is responsible for Newsweek's coverage in the rapidly-changing
field of health journalism.
As an editor, he organizes Focus On Health, a popular
personal-health section. As a writer, he has produced ground-breaking stories
on everything from AIDS and brain science to the supplements craze. Judges
for the American Society of Magazine Editors have called his work "medical
journalism at its best." Cowley joined Newsweek as a general editor in
March 1988. He was promoted to senior writer in August 1988 and to senior
editor in August of 1997. Previously working at The Seattle Times, The Seattle
Weekly and The Sciences, Cowley joined Newsweek as a general editor in March
1988. He was named Senior Editor in August of 1997. Cowley is joined in this
live talk by Temple Grandin. An author and a livestock scientist, Grandin
suffers from autism. Grandin is considered an authority on what it means to
have autism yet still successfully pursue career options.
Newsweek: Hi, This is Geoff Cowley. I'll share whatever
insight or information I can from the reporting we did for this week's cover
story.
--------------------------------------------------------------------------------
Newsweek: Hello my name is Temple Grandin, and I’m
Assistant Professor of Animal Science at Colorado State University. I’ve
written a book about my experiences with autism. It’s called “Thinking
in Pictures.” I’m ready to answer your questions. The one thing
I want to say is if your child is autistic or shows signs of autistic behavior,
don't wait. Get your child into a good educational program immediately. I
cannot emphasize that enough. It's just so important.
--------------------------------------------------------------------------------
Pequannock, NJ: Mr. Cowley: Do you know any facility or
group that gathers anecdotal information on autism/asperger-sufferers with
the purpose of finding other physical or behavioral commonalties that could
be early indicators of the condition?
Newsweek: I'd suggest you take a look at the "Northern
Light," (http://special.northernlight.com/autism/), the excellent Web
site maintained by Cure Autism Now (CAN). Under the heading "New Research,"
you'll find a long list of research centers conducting studies of possible
interest.
--Geoff Cowley
--------------------------------------------------------------------------------
St. Louis, MO.: Temple: How does an autistic child feel
when he enters a room full of people?
Newsweek: If there are a lot of people, he may be overwhelmed
by all the noise. The noise may hurt his ears like a dentist drill hitting
a nerve. This is the reason why autistic children will often throw a tantrum
in a noisy place such as a supermarket or shopping mall.
--------------------------------------------------------------------------------
New Haven, Connecticut: I have three sons, and my oldest,
who is 11, is autistic. We've worked very hard with him and he's come a long
way. He's in special education at school, and his reading, musical, artistic
and memory skills are off the charts. However, his social, emotional, and
interactive skills are on a five-year-old level. He's getting older, and things
are getting a little more difficult. Can you give me any suggestions as to
how to further work with him? Also, would it be a good idea to send him to
a school that deals solely with autistic children?
One other question: My youngest son, who is 10 months
old, will be due for his one-year shots soon. I'm going to refuse the MMR
shot, as this vaccine is in question as to whether it causes autism. Am I
doing the right thing? What are the ramifications?
Newsweek: I'm in no position to recommend one type of
schooling over another for your 11-year-old, but it does sound like he would
benefit from some assistance with social skills. The Autism Society of America
(http://www.autism-society.org/) lists a number of resources under "getting
started." And the Web site maintained by Families for Early Autism Treatment
(http://www.feat.org/resources/default.htm) includes a state-by-state list
of resources.
I understand your concerns about the MMR vaccine, but
I fear you're taking a clear risk to avoid a risk that has not been found
to exist. There is no question that the MMR vaccine protects children from
measles, mumps and rubella. Those conditions are potentially deadly. If, as
you fear, they can also trigger autism, going unvaccinated may increase the
risk of autism by leaving the child vulnerable to fullscale infection.
--Geoff Cowley
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Antioch, California: We have a 3-year-old daughter whose
speech was delayed. We are in the process of entering her in special school.
We don't know if she has Autism. We'd really appreciate anything you can tell
us.
Newsweek: Autism isn't the only possible reason for a
speech delay, but speech delays should be investigated with that possibility
in mind. If your daughter's problems are serious enough to require special
education, I think most experts would agree she should be evaluated for autistic
tendencies, to ensure that the special intervention she receives is appropriate.
If your pediatrician isn't experienced in diagnosing autism,
seek a referral to a pediatric psychiatrist who is. To get a better sense
of the warning signs you can watch for yourself, see the checklist that FEAT
(Families for Effective Autism Treatment) maintains on its Web site: http://www.autismbehaviortherapy.org/earlywarn.htm
--Geoff Cowley
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Pompton Lakes, NJ: Will my son ever know what it feels
like to fall in love? What kind of work will be available to him?
Newsweek: Let's answer the work question first. Many people
with autism have very good memories. They may be good at jobs such as computer
programming, engineering, drawing and blueprint making, and graphic arts.
Interests in these subjects should be encouraged because jobs in these fields
can provide intellectually satisfying work. Satisfying work will give the
person with autism a more satisfying life. People with autism will often get
good social interactions by sharing interests such as programming computers
or hobbies such as collecting coins or stamps.
As far as the question of love, people with autism can
be very loyal, they'd be the first person to run into a burning house to save
a friend. That friend will be somebody with whom they have shared interests,
in things such as computers or graphic arts. Interesting work and worthwhile
work that makes the world a better place makes my life worth living.
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Vancouver Canada: What is the earliest age an accurate
diagnosis of autism may reliably be made; and who is best able, in general,
to make such a diagnosis?
Newsweek: Clearcut autistic disorders are not hard to
recognize. Any pediatrician can detect the core problem -- a child's blindness
to the the existence of other minds -- with a simple screening test called
CHAT (Checklist for Autism in Toddlers). The test is normally given at 18
months. It involves asking the parent a couple of questions (Does the child
ever point to direct your attention? Does the child ever play make believe?)
and putting the child through a few brief exercises (pointing to direct someone's
gaze, following another person's pointing gesture, engaging in pretend play).
A child who can't do any of these things is almost certainly autistic. Mixed
results may require further evaluation by a child psychiatrist.
--Geoff Cowley
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Pembroke, Mass: Is there a greater chance for "recovery"
with earlier intervention and more intense therapies, or are the "success"
stories rare? Thank you.
Newsweek: This is one point that every expert in the field
seems to agree on. Kids who are diagnosed early, and given the kind of intensive
help needed to compensate for their problems, seem to enjoy far better outcomes
than kids who are diagnosed later. Patricia Krantz, co-director of the world-renowned
Princeton Child Development Institute, has found that half of the autistic
kids entering PCDI's program before age 5 go on to attend mainstream schools.
Only 10 percent of those entering after age 5 make that transition. Obviously,
there are exceptions to this pattern -- kids who who respond respond poorly
to early intervention, or who respond brilliantly after being diagnosed late
-- but the take-home lesson is clear.
--Geoff Cowley
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Greensboro, NC: For Temple Grandin: Do you understand
the emotional concept of happiness? If so, are you generally happy? Thank
you.
Newsweek: Yes, for the most part I am happy. Many people
with autism have problems with constant nervousness and anxiety. My life has
been greatly improved by anti-depressant medication because the medication
reduces constant anxiety that feels like being in a constant state of stage
fright. I can remember as a child finding a message in bottle on the beach.
I was so happy I ran all the way home with it, jumping up and down, shouting,
"I found a message in a bottle!" It was rare and exciting discovery.
People with autism have strong emotions. I can be happy,
I can be sad, I can be angry, but the emotions are less complex. My emotions
are more in the present. I can be angry and then 10 minutes later I'm fine.
--Temple
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Lake Hiawatha, New Jersey: If doctors, government health
officials and professionals in the autism field can't explain the epidemic
of autism, why are they denying that vaccines are linked to autism? Why isn't
there more funding of independent studies into the autoimmune/gastrointestinal
issues brought up by such researchers as Dr. Vijendra Singh, Dr. Andrew Wakefield
and Professor John O'Leary at the April 6, 2000 autism hearings in Washington
DC?
Newsweek: I haven't heard responsible scientists claim
that vaccines can be ruled out as a trigger for autism. Health officials in
both the United States and Britain have acknowledged the need for further
research into that possibility, and at least three federal agencies (the CDC,
the National Institute of Child Health and Human Development, and the National
Institute of Deafness and Communication Disorders) are now conducting studies
aimed specifically at detecting any possible connection. You can read more
about the research on vaccines and autism at http://www.cdc.gov/od/nvpo/fs_tableVII_doc3.htm,
http://www.mrc.ac.uk/whats_new/press_releases/PR_2000/mrc_18_00.html, and
www.mrc.ac.uk/Autism_report.html
That said, I'd urge you to keep two things in mind. First,
the available evidence does not suggest that vaccines carry any significant
risk. No one has been able to show that 1988 introduction of the MMR vaccine
caused any spike in autistic disorders, or that kids who receive MMR are at
greater risk of autism than kids who don't, or even that autistic symptoms
are more likely to show up immediately after vaccination than at other times
during early childhood. The other thing to keep in mind is that vaccines are
not the only potential triggers worth investigating. Other possible risk factors
include prenatal maternal infection, toxic exposures, food allergies, prenatal
malnutrition, and immune system anomalies.
--Geoff Cowley
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Fairfax, VA: The steroid prednisone has been used very
successfully by a number of neurologists to treat autism spectrum disorders,
and is one of the only medications to actually reverse a symptom of the disease
and restore speech & language functions. Prednisone is approved for a
variant of autism called Landau-Kleffner wherein the autistic symptoms are
accompanied by seizure activity, so there is a precedent for its effectiveness.
Yet compared with, say, secretin, it is almost unknown, even by professionals,
even though it has a high rate of success so far. Can you speculate why there
has been so little awareness of this medication in both the public and medical
communities?
Newsweek: One reason is that the effects have yet to be
well documented. As the support group Ahead with Autism notes in its excellent
overview (http://www.aheadwithautism.com/pred01.html), "the use of prednisone
in autism is still experimental and has not been clinically studied in a scientific
manner. No placebo-controlled studies have been carried out, nor have there
been any long term follow-up studies of children who have received prednisone
for autism. To date, its effectiveness and safety are known only through only
anecdotal evidence from parents and doctors, based on individual accounts
or small sample sizes. There is no way at this time to predict whether prednisone
could be helpful or harmful for any given child."
But as you say, there is good cause for optimism. Autism
may sometimes stem from an autoimmune response, in which the immune system
mistakenly attacks particular tissues within the body. Prednisone is an immunosuppressant
drug that has been used for nearly 50 years to treat conditions like rheumatoid
arthritis and, more recently, to prevent the rejection of transplanted organs.
Whether by that mechanism or some other, prednisone helps reduce seizures
in kids with certain forms of epilepsy, and some specialists suspect that
it can help improve language ability in people with autism. Dr. Stephen Mott
of Georgetown University and the Children's National Medical Center in Rockville,
MD, is working to organize a larger study.
--Geoff Cowley
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New Berlin, WI: Please comment on the use of SSRI type
of drugs (like Prozac and Respradal) for treating Autism and PDD.
Newsweek: These drugs don't treat the underlying neurological
problem, but they can help make life with autism far more livable. Many people
with autistic disorders find that SSRI antidepressants ease their anxiety
and help free them from the rigid, repetitive routines that dominate their
lives.
--Geoff Cowley
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St. Petersburg, Florida: Temple: I have read all of your
books and they have helped me understand my daughter, who is also a higher
functioning autistic. She finds interpersonal relationships the hardest thing
to understand...she does want friendships, but often times they give her more
pain than anything else. She spends so much time trying to understand why
people treat her the way that they do.
Does your need for interpersonal relationship hinder your
daily activity as it does my daughter's? Do you have a relationship with your
birth mother? Are there any traces of autism in your immediate family? As
you get older, are you more capable of generalizing information? I have noticed
that Jaymie is becoming more able in this area as she has gotten older.
Thank you for your answers to these difficult questions.
Newsweek: A person with autism is constantly learning.
Everyday I learn more about how to get along with people. It's almost like,
you never really grow up, you just keep learning and learning and getting
better and better. One of the things that helped me was I made myself really
good at what I do. If you make yourself really good at something, people respect
that. That helped me a lot in my relations with other people, because they
hired me to do design work for them. People respect talent. This is why it
is so important to develop the things that the autistic person can be good
at and that are employable skills.
As a young child I had friends. Other children liked to
play with me because I was good at making things, like tree houses. Other
children thought that was neat. High school was horrible. I was teased by
the other teenagers. That was the worst part of my life. I was really helped
by my science teacher, who gave me science projects to do. That motivated
me to study. My science teacher was a very important mentor in helping me
get through high school and succeed at college. I just avoided the life of
high school teenagers. They are highly social beings that I did not understand.
Now that I'm an adult, I have a common bond with other
scientists that study animal behavior. I also have a common bond with ranchers
and people that raise livestock. It's through shared interests that I get
social interaction. Another common bond is talking about autism.
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Hagerstown, Maryland: Temple: Would you have benefited
from individualized, controlled language training with object/word associations
to have removed you from thinking merely in images? If you had grasped the
concept that words/letters are symbols themselves, and basic shapes (such
as a ball) can be seen in everything around you, would it have calmed your
fears with a sense of familiarity?
Newsweek: I think in pictures. All of my thoughts are
like videotapes inside of my head. When I read the word dog, I see pictures
of different very specific dogs. When I see my student Jennifer's dog for
instance, I see her in Jennifer's living room. Every thought has a picture,
even abstract things, such as beauty or truth. When I think of beauty, I see
pictures of specific beautiful things, for example, the Rocky Mountains, the
Mona Lisa, the Grand Canyon. If you say truth, I see a picture of my hand
on the Bible in the courtroom. A good approach is using flash cards. An example
of this would be a card with a picture of a cat and underneath the cat's picture
is the word "cat". The word cat must be on the same side of the
card as the picture. You hold it up so that the child can see the picture,
read the word and hear it all at the same time. This method works well with
an autistic child who often repeats things that have been said to them.--Temple
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Santa Barbara, Ca.: Is there a known link between the
onset of autism and infection as you inferred in a previous response?
Newsweek: There aren't many "known" links, but
infections (especially those encountered in the womb) are good suspects. Congenital
(i.e., prenatal) rubella has been strongly linked to autism, and some researchers
suspect that common infections such as strep may also trigger autism in susceptible
people. Antibodies directed against strep have been implicated in a range
of conditions known as PANDAS (pediatric autoimmune neuropsychiatric disorders
associated with streptococcal infection). The best-known PANDAS are obsessive-compulsive
disorder and Tourette's syndrome, but Dr. Eric Hollander of New York's Mount
Sinai School of Medicine suspects that strep may play some role in autistic
disorders (at least in the repetetive behavior associated with them) if encountered
during the first trimester of pregnancy.
--Geoff Cowley
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Carmel, CA.: My high functioning autistic daughter has
trouble organizing and keeping track of her things. Do you have that problem?
If so, how did you keep organized in college?
Newsweek: I had no problems keeping track of my things.
Different people can have different types of problems. One of the things that
works well with people with autism is to write things down. For example, I
have problems with following long strings of verbal directions. I would much
rather have written directions.
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Bandon, Oregon: I have a 6-year-old boy, who up until
2 months ago never hit, scratched or bit anyone (he was only self-abusive).
Now he seems out of control, biting and hitting. What do I do? I don't know
what has changed or set him off.
Newsweek: I would need to talk to you for at least an
hour to track down all the different variables that might be causing your
son's problem. But there are some general things that can cause behavior problems.
Sudden changes in routine, such as a new teacher or new school can cause problems.
Noisy environments can be troublesome. Some children cannot tolerate flourescent
lighting because it flickers and flashes like a discoteque. Autistic children
are often highly sensitive to their environments and their nervous system
can become overstimulated.
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Fort Belvoir, VA: I am a little unclear on whether or
not Autism is neurological. Am I correct in uderstanding that it is, and in
that case can neurologists do brain scans to determine for sure that a child's
symptoms are due to Autism and not due to say birth trauma?
Newsweek: There's no question that autism is, at root,
a neurological problem. Imaging studies have revealed many differences in
the way autistic and typical brains respond to social stimuli, but no one
knows which of those differences is most consistent or most important. I'm
not sure there's a valid distinction between "autism" and "birth
trauma." Regardless of what interrupts normal brain function, the autistic
person is one who lacks normal social perception. Certain traumatic injuries
can, in fact, damage social cognition.
--Geoff Cowley
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Taylors, South Carolina: What you recommend to a parent
who has just received a diagnosis of autism, and what are the various types
of treatments available? How are parents to decide (finding information is
a challenge in itself)?
Newsweek: First of all join a good support group, such
as a chapter of the Austism Society of America (Tel. 800-3-AUTISM). If it
is a young child, don't wait. Educational programs are most effective when
they are started at ages 2 and 3. Even 4, 5, and 6 years olds can greatly
benefit from a good educational program. Adults that have received no treatment
can even improve with good education, training and therapy.--Temple
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Arlington Heights, Il.: What was the hardest challenge
you had to overcome in getting and dealing with a job?
Newsweek: To get a job, you need to sell your work. Make
a portfolio of your work to show people. After you get a job, you'll need
some job survival skills. One thing I had to learn was diplomacy. When other
employees make mistakes, you can't just tell them they are stupid. I've learned
through experience this is something you just do not do.
Another thing that is good is freelance work, because
it avoids some of the social problems. When I freelance, I go in, design the
project, get the equipment started up and then I leave. I'm there on a short-term
basis, and that avoids a lot of social situations that might get me into trouble.--Temple
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Dallas, Texas: What is the incidence of a child with Down's
Syndrome having autism also? How can you tell the difference between severe
mental retardation and autistic characteristics? Aren't they sometimes the
same?
Newsweek: Dpown syndrome is strongly associated with early-onset
Alzheimer's disease but not with autism. True, people with classic autism
often suffer from low IQ as well, but autism does not reflect of low general
intelligence. In fact many autistic people have superior IQs and extraordinary
aptitudes for math, memorization, music or art. But even autistic with superior
cognitive skills tend to fail at very simple "mind reading" tasks.
They don't readily perceive that other people have minds that can pretend
or believe or joke or misunderstand.
--Geoff Cowley
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Pompano Beach, Florida: My question relates to the lack
of social interaction that is demonstrated by my six-year-old autistic little
boy. He will very rarely attempt to play with other children even when encouraged.
What can I do to help promote his interaction and play skills?
Newsweek: One thing that might help is getting him and
another child involved in doing an activity that your son really likes to
do. If he likes trains, then work with the children on playing a game involving
trains.--Temple
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Newsweek: Thank you so much for having me here to discuss
autism. I hope my information has been helpful to parents and teachers working
with autistic children and adults. If you would like some further information,
you can read "Thinking in Pictures" and visit autism.org. Thanks
again, Temple.
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Laura Fording: Thanks, all. Join us every Wednesday for
Cover Talk.
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