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| A
child with autism must slowly learn to navigate a world
of grays. For the past two decades, Chicago psychiatrist
Bennett Leventhal has provided a rudder for hundreds of
such children—and their families. |
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| By
Walton R. Collins |
| Photo illustrations by Dan Dry |
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Antonio is
restless. He’s done everything asked of him this morning—placed
the squares, circles, and crescents into the correct holes on the
puzzle board; stacked the different-size blocks in almost the right
order, not just once but a couple of times; giggled at the tuneful
toy designed to hold his wandering attention. But it’s been
a long morning, and enough’s enough.
Squirming
out of his seat at the testing table, the 6-year-old darts to a
corner and faces the wall, making nonsense sounds. He won’t
look at Catherine Lord, the psychologist who’s testing him.
Or at his mother and father, who sit patiently watching this diagnostic
session in a small interview room at the University of Chicago Medical
Center.
Lord teases
the boy back to the table with a toy that blows soap bubbles and
snatches him on the fly for some tickling, telling him he’s
done good work this morning. He looks at her briefly, then squirms
away again. For the first time he speaks a recognizable word: “Bathroom.”
It is one of six words that comprise his entire vocabulary. His
father volunteers to do the honors, scooping Antonio up and heading
to the door.
In a darkened
anteroom they encounter a large, genial, bow-tied man with a graying
beard and eyes that can snap and twinkle. “Good morning, Dr.
Leventhal,” the father greets the psychiatrist, who has been
observing through one-way glass. “Go ahead to the bathroom,”
the psychiatrist says, “then we’ll go on upstairs to my
office.”
In Bennett
Leventhal’s sunny, book-lined office, Antonio (not his real
name) ricochets from a couch to a locked door, and from there to
a shelf, where he grabs a handful of toys and begins to throw them.
He seizes a toy car and runs it around the rug, oblivious to the
psychiatrist and his anxious parents. Pure energy, he’s soon
climbing on an armchair and leaping over the arm, once, twice, three
times; each time, his dad reaches out a practiced arm to guard him
from harm. Antonio is small for his 6 years, a handsome, appealing
child, the kind people instinctively want to hug. But he’s
no hugger.
“He’s
wild at home,” his mother says, “always climbing, jumping,
running.”
“Does
he ever play?” asks the psychiatrist.
“Yes,
he plays with cars almost exclusively. Anything with wheels he pushes
around on the floor. He watches TV a lot—the same two videos,
Barney and The Lion King, over and over.”
“Does
he play with other children?”
“He’ll
follow them and imitate them, but he won’t play games with
them.”
“Does
he eat?”
“He eats
fine, but he has to eat noodles before he’ll eat anything else.”
“How
about sleep?”
“Not
through the night. He used to wake screaming and wouldn’t accept
consolation. That’s getting better lately.”
“Is he
affectionate?”
“Yes,
but he won’t come to us voluntarily.”
More questions
follow as Leventhal, the Irving B. Harris professor of child and
adolescent psychiatry, professor of psychiatry and pediatrics, and
vice chair of the U of C’s psychiatry department, fleshes out
a diagnosis he has already reached from information Lord provided.
Her role is to evaluate new patients from a behavioral perspective.
His is to do the neurological assessment. Together, they’ll
prescribe a course of therapy.
This morning
Leventhal gives Antonio a physical in his office, a setting that
his young patients generally find less threatening than a sterile
examining room. Finally it’s time for the formal diagnosis—a
diagnosis that Antonio’s parents, like many of the hundred
or more families who visit Lord and Leventhal each year, are already
anticipating.
“This
is a sweet, cute kid,” the psychiatrist begins. “That’s
in his favor—such kids are more likely to get help. His problem-solving
skills are clearly not the same as those of kids much younger. At
nonverbal tests such as matching colors and shapes he’s between
the ages of 3 and 3 1/2, maybe close to 4. In language he’s
much farther behind, 13 to 18 months. In understanding, 18 months
to 2 years. As for how to function in social settings, he doesn’t
get it. This translates into an IQ of 40. Antonio is mentally handicapped
in the high range.
“But
his primary problem,” Leventhal concludes, “is autism.”
As defined
by the Autism Society of America, the disorder is “a developmental
disability, the result of a neurological disorder that affects the
functioning of the brain in the areas of social interaction and
communication skills.” Four times more common in boys than
in girls, autism was once thought to be a form of schizophrenia
and the product of poor parenting, especially on the part of the
mother. Over the past 30 years, however, those misconceptions—fueled
to some extent by theories developed by child psychologist Bruno
Bettelheim when he taught at Chicago from the 1940s to the 1970s—have
faded, in part because of the efforts of a U of C research team
led by Leventhal.
People with
autism have trouble communicating with the outside world. The range
of symptoms is wide: repeated body movements, such as rocking; unusual
responses to other people, such as aggressive approaches to strangers
or retreats into a bubble of isolation in a room full of people;
and panicked resistance to any change in the daily routine. In rare
cases, people with autism may hurt themselves or others.
The syndrome
is now seen as part of a spectrum of Pervasive Developmental Disorders
(PDD); if an individual shows six or more of 12 symptoms listed
across three major areas—social interaction, communication,
and behavior—a diagnosis of autistic disorder is made. “The
best guess,” says Leventhal, “is that PDD affects about
one percent of the population, with autism being about a fifth of
those cases. Most autistic children have an onset of symptoms prior
to the age of 3, usually in the first or second year of life. It’s
not a deteriorating disorder; kids with autism get better over time.
They just don’t catch up to the normal developmental curves.”
Much of what
the average American knows of autism stems from the popular 1988
film Rain Man, in which Dustin Hoffman played a middle-aged autistic
man. Experts agree that he did a good job of mimicking autistic
behavior: obsessing over having syrup on the breakfast table before
the pancakes arrive, rocking from foot to foot and repeating familiar
mantras at moments of stress, avoiding eye contact. But the film
character was also a savant who could do complex mathematical calculations
in his head, and such talents are found in only ten percent of autistics
(versus one percent of the population at large).
The plot of
a more recent film, Mercury Rising, revolved around an autistic
boy named Simon who accidentally cracks a puzzle that threatens
to expose U.S. secret agents around the world. Leventhal was a consultant
for that film, coaching actor Miko Hughes on portraying Simon realistically.
That meant having Hughes stifle the most deep-seated, nearly irrepressible
elements of nonverbal language.
“Many
other animals have social rules,” says Leventhal, “but
the subtlety and nuances we humans enjoy in the social world, language
and gesture and so on, are unique. Who ever taught us to nod in
conversation? What in our brain organizes us so we say ‘mm-hmm’
in a way that’s timely? Just try stopping that—it was
one of the most demanding parts of working with Miko in the movie.
“Think
about your voice when you speak,” Leventhal continues. “First
of all, you change the rhythm when meanings change; inflection changes
when you ask a question. Something in the way the brain works allows
us to learn these subtleties of interaction, to use them ourselves
and to appreciate them in others. But a child who’s autistic
is profoundly deficient in these behaviors. He’s missing the
social part of the world.”
Because they
don’t react normally in social situations (autistic babies
often resist parental hugging and attention), autistic people may
be seen as living emotionless lives. Not so, says Leventhal. “If
you yell at an autistic child, they know something’s wrong;
if you laugh a belly laugh, they know something’s funny. But
a sardonic grin? They’re not gonna get it. So at the black-and-white
poles of any emotion they know something’s happening. But 99
percent of our lives are lived in the gray, and they don’t
have the ability to manage the grayness.”
As a teenager,
Bennett Leventhal worked at a summer camp for developmentally disabled
children in New York state; there, he got to know autistic kids.
After college at Emory and Louisiana State Universities and medical
school at Louisiana State, he says, “I realized I didn’t
want to be a surgeon or an internist. The logical choice was to
become a child psychiatrist.”
And so he
did, serving a residency at Duke University Medical Center before
coming to Chicago in 1978. Today, his curriculum vitae runs to 24
pages, a testament to his ability to move between the clinical and
the research sides of the disorder. In 1991 the Autism Society of
America gave him its individual achievement award, and he serves
on the society’s panel of professional advisers. From 1990
to 1992, he was co-chair of the Fifth Congress of the World Association
for Infant Psychiatry and Allied Disciplines. He is frequently quoted
in newspaper and magazine articles on matters such as children’s
moral sensibility, the complexities of determining how nature and
nurture interact in shaping children’s personalities, or how
to bring children safely through traumas like the birth of a new
sibling or a divorce.
He smiles when
he pauses to consider how he packs all that activity into his daily
routine. His punch-line conclusion: “I spend a third of my
time teaching, a third of my time doing research, a third of my
time taking care of patients, a third of my time with administration,
a third of my time with my family.” (He and his wife, Cecilia,
have three children, ages 20, 17, and 11.)
The “third”
of his time devoted to autism research is further divided among
numerous projects aimed at tracking down the cause of autism. He
is one of a trio of leaders of the Medical Center’s autism
research team. Catherine Lord directs the U of C’s developmental
disorders clinic, which sees children from all over the United States
and abroad, and whose programs are designed to get a more specific
definition of autism as a clinical syndrome and to investigate useful
psychosocial interventions in the care of individuals with autism.
Meanwhile, Edwin H. Cook, Jr., runs the University’s developmental
neuroscience lab. With Leventhal and researchers from other universities,
Cook focuses on the molecular basis of pediatric-onset neuropsychiatric
disorders, concentrating on the molecular genetics of attention-deficit/hyperactivity
disorder, obsessive-compulsive disorder, bipolar mood disorder—and
autism.
“We believe,”
says Leventhal, “we have discovered the first of several genes
that cause autism [the serotonin transporter gene], and we are working
intensely on what we believe will be another. Other groups have
found possibly as many as two or three other genes that may be pivotal
in the cause of autism.” Optimistically, he says, it could
be another two to five years before all the relevant genes have
been located and researchers begin “the arduous task of understanding
how these genes work and interact to cause autism and related disorders.
“By the
standards of careful science,” Leventhal says, “the discoveries
are imminent—any time in the next two to 20 years. However,
we realize that this is entirely too long for folks with autism
and their families to wait, so we are also working on treatments
to try to ameliorate the effects of the disorder while we work on
understanding the cause and possible cures.”
Justin McMillan
is a 16-year-old patient of Leventhal’s who runs cross-country.
At a high-school meet not long ago, some of his teammates noticed
he was losing steam and lined the race route to yell encouragement.
Buoyed by his cheering section, Justin covered the last 100 yards
with his arms raised triumphantly—and finished dead last.
“It was
touching to see,” recalls his mother. “The team accepts
Justin very well. They know he barely runs; he walks fast. They
know he needs help pacing himself. He doesn’t care that he’s
last. He’s proud that he finishes, and so are his parents,
his coaches, and the team.”
A high-functioning
autistic teenager, Justin McMillan (his real name) gained a certain
celebrity during the filming of Mercury Rising by helping
Leventhal coach Hughes. “I taught him how to do autism,”
grins Justin.
The youngster has been a participant in a double blind study of
a new drug that shows promise in controlling the attentional problems
characteristic of autism. He was chosen because the stimulants he
had been taking were not working as well as Leventhal would like.
On a recent
afternoon in the psychiatrist’s office, he and his mother,
Francie McMillan, have just learned they’re facing a choice:
Justin is eligible for release from the study because he hasn’t
been showing any improvement, perhaps because he was getting the
placebo. Leventhal elaborates: “You can leave the test and
get medicine we know is the real medicine—it will be free—or
you can stay in the test a little longer.”
Justin doesn’t
hesitate. He wants to quit the study. Francie agrees, and Leventhal
writes a prescription for another drug related to the study.
Leventhal is easy and playful with patients in his office, but his
underlying manner is no-nonsense. This afternoon he’s been
teasing Justin, withholding an envelope containing $20 (payment
for participation in the study) until Justin tells him whose picture
is on the bank note. But a short time later, when Leventhal announces
it’s time to go downstairs for a weight and height check, Justin’s
attention problems have kicked in and he is lying face down on the
couch. When he doesn’t respond, Leventhal repeats the instruction.
Still no response. The burly psychiatrist walks to the couch, lifts
Jason by the back of his T-shirt, and sets him on his feet. They
both laugh.
Justin was
adopted at the age of six weeks. “The second night we had him,”
recalls his mother, “I noticed that one of his eyes turned
up and out in the upward gaze. It was Christmas time, and he loved
looking at the lights of our tree from his infant swing. At that
time I was reading T. Berry Brazelton’s book Infants and
Mothers, which describes three baby types: the average baby,
the quiet baby, and the active baby. Justin was quieter than the
quiet baby. All of his gross motor milestones were late.”
When Justin
was nine months old, Ken and Francie McMillan sought medical advice.
A CAT scan revealed what a neurologist called “an insult to
the brain,” and he recommended further testing and a parent-infant
program for developmentally delayed babies. “We put Justin
into early-childhood education, something not usually done with
young autistic children because of a lack of diagnosis at that age.”
That early intervention paid off for their son, who is now in mainstream
classes.
As in Justin’s
case, diagnosis of autism typically begins when parents notice a
child is not developing normally and seek a pediatrician’s
advice. “More than likely,” concedes Leventhal, “the
pediatrician will say, ‘He’ll grow out of it.’ Let’s
be fair to the pediatrician, though: You don’t know exactly
what’s going on, you have an anxious mom, you have only six
minutes for a visit, so you buy some insurance: ‘He’ll
grow out of it.’ If it’s an experienced parent or one
who’s in a large extended family, someone will say, ‘This
kid isn’t right.’ If the parents are alone, as is more
common now, at some point they’ll reach a limit and say, ‘There’s
something really peculiar with this child.’ ”
There are
two standard diagnostic instruments—one involves interviewing
parents, the second is a set of tasks the child is given to perform.
They supplement observation of the child in home and school settings,
where behaviors characteristic of autism can be spotted.
Treatment is another matter. “We treat symptoms,” says
Leventhal. “If we treat earlier, we’re more likely to
get better outcomes. And irrespective of treatment, people with
autism improve over time. The kids who have normal intelligence
and speak do best in the long run.”
Treatment
is primarily educational and social, though medication is sometimes
useful in controlling behavior. “I tell parents,” says
Leventhal, “that the starting point is to manage behavior;
first, for the child’s safety, but also to try to keep them
from looking too peculiar, because the more peculiar you look, the
more likely you are to be isolated by society. The second thing
to work on is language, language, language. Thirdly, try to teach
basic social and educational skills. Teaching social skills is not
unlike teaching a foreign language in high school; you don’t
learn to speak in French or Spanish, you memorize by rote.
“How
do you teach by rote?” Leventhal asks. “By teaching the
child to look at somebody when they talk to you, shake their hand
when you greet them, say ‘Hello, how are you?’ You want
to get these children into the world so they can be participants.”
For Antonio’s
parents, the long, anxious morning is nearly over. Antonio has been
taken to a playroom by a hospital aide so Leventhal can pay full
attention to the parents. His diagnosis—autism and mental retardation—has
come as no surprise. Now they need advice on what to do: how to
manage Antonio, how to help him be a participant in his world, how
to give him the best shot at a happy life.
“We want
him to have a good school experience,” counsels Leventhal.
At 6, Antonio is beyond the cut-off age for the Montessori school
he attends. The doctor wants to ensure that his next school has
a staff trained to deal with Antonio’s needs, which include
supplemental services.
“We want
to help him develop as much language as he can,” the psychiatrist
explains, “so he should have speech education, 20 or 30 minutes
of it every day, tied to his classroom activity. He’s such
a good mimic and uses gestures so well, maybe he could learn a little
signing. He needs an aide who will work with him in the classroom,
but we don’t want them over in a corner away from the rest
of the class.” School districts generally pay for classroom
aides, and some also help underwrite the costs of home training
aides, which Leventhal also encourages. But many of the expenses
that parents of autistic children incur force them to dig deep into
their own pockets.
One of Antonio’s
parents’ major fears is for their son’s safety. He’ll
dart away on the sidewalk or in a mall and ignore their shouts.
“You’ve got to alter this behavior,” Leventhal tells
them now. “He needs structure. I believe in a three-step system
to provide that structure: You tell him once to do something. Next
you say, ‘Look at me,’ and tell him again. Third, you
say, ‘I’m going to help you do it,’ and you physically
help him do what you’ve told him to do. If he throws a tantrum,
put him in his room or somewhere until he calms down. Then insist
that he do whatever it was. The first two weeks are hard on parents,
but then the benefits will kick in.” Among the benefits, Leventhal
assures them, will be a more responsive child at moments of danger.
Antonio’s
parents look a little less worried and a little more hopeful than
they did earlier this morning. Before they take their leave, Leventhal
offers one last bit of advice: “Children like Antonio drain
parents. You need respite.” The couple nods appreciatively.
“Go out to dinner one night a week, and do it faithfully. Have
one longer getaway a month,” he adds.
“This is important, so let’s assign some tasks right now.
Who’s going to be responsible for setting up the weekly dinners,
making reservations? Who’s going to handle the weekend getaways?”
Mom takes
the dinner chores and dad will handle the getaways. The consultation
is over at last, and Antonio’s parents leave to retrieve their
son, buoyed by the knowledge that this genial, authoritative psychiatrist
is now their ally and advocate.
Over the next
few months, they’ll return at least monthly for Leventhal to
monitor Antonio’s behavioral progress and consider medication.
Beyond that, the psychiatrist will follow the case as long as the
family wants—he has followed some families as long as 15 years.
Their son is still ill, but Antonio’s parents aren’t alone
in this anymore.
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