From the moment parents
absorb the shock that their child may be autistic, they
enter a dizzying world of specialists, therapists and,
alas, purveyors of snake oil. Getting the right help
quickly is paramount, but it is hard to make good
decisions when you are in a panic or fighting despair.
For the past 20 years,
the dominant way to work with autistic children has been
based on Applied Behavior Analysis. ABA derives from the
classic work of psychologist B.F. Skinner, who
showed--mostly in animals--that behavior can be altered
with carefully repeated drills and rewards. In 1987,
Ivar Lovaas at UCLA published a small study with huge
repercussions. He reported that 9 out of 19 autistic
children taught for 40 hours a week with behaviorist
methods had big jumps in IQ and were able to pass first
grade; only 1 out of 40 in control groups did so. It was
the first bright ray of hope in autism.
Recent years have brought
questions about the ABA model. When Lovaas protégé
Tristram Smith tried to replicate the 1987 findings in a
2000 study, he got a more modest success rate on
academic measures and virtually no gains in social
behavior. Others, meanwhile, have devised new ways of
working with autistic kids. One of the best known was
developed by child psychiatrist Stanley Greenspan, who
spent 15 years studying infant development at the
National Institute of Mental Health. His method, called
DIR (developmental, individual-difference, relationship
based), has as its premise the idea that an exchange of
emotional signals, initially between mother and infant,
form the basis for learning in childhood. Greenspan
trains parents and teachers to engage the emotions of
even the most withdrawn toddlers by getting down on the
floor and entering the child's world, helping turn
repetitive acts like lining up blocks into playful
interactions. He describes the method, also called
Floortime, in a new book, Engaging Autism.
While the majority of
U.S. programs for autistic children are based on ABA
techniques, DIR has made inroads, and many programs now
mix elements of both. How do the techniques differ in
practice? To find out, TIME visited two schools, each a
model for one school of thought.
ALPINE LEARNING GROUP
IT'S EASY TO SEE WHY A
PARENT would fight to get a child placed here. Who
wouldn't want this calm, orderly world for an anxious
child with all the sensitivities of autism? Alpine, in
Paramus, N.J., has 28 students, ages 3 to 21, in six
gleaming, light-filled classrooms. The staff-to-child
ratio is 1 to 1. The $72,223 tuition is covered by the
state--federal law requires a free education for
children with disabilities in an "appropriate" setting.
At Alpine, every goal,
every lesson, every response is carefully documented in
binders that track each child's progress. That is the
rigorous heart of ABA, explains executive director
Bridget Taylor, who co-founded the school in 1988. "I'm
a scientist-practitioner; I need data," says Taylor, a
certified ABA therapist with a Ph.D. in psychology. The
binder for Jodi DiPiazza, 4, is easily seven inches
thick, though Jodi has been at Alpine less than a year.
Like most other children at the school, she started ABA
therapy at home as a toddler.
In her classroom, Jodi
sits quietly at a small table with a teacher. They take
turns looking at photos and using a complete sentence to
describe the scene ("The girl is riding a bike"). Each
correct answer earns Jodi a sticker on a chart; with
enough stickers she can choose a reward. ABA was once
famous for its M&M rewards, but better programs now
tailor positive reinforcement to the child's
preferences--a favorite activity, a hug or, in the case
of one Alpine student, a packet of ketchup. Though Jodi
didn't talk at all until age 3, she speaks well and is
mastering skills quickly with the help of two hours of
tutoring in the evening. "From the moment she wakes up
till she goes to sleep, everything is structured," says
her mother Michelle, who is thrilled with Jodi's
progress.
Taylor says 29% of her
students, most from ages 5 to 8, get mainstreamed into
regular schools, generally with an aide. Many who remain
at Alpine have limited language skills; some of the
older students use electronic devices to express basic
desires. The ritualistic behavior that is characteristic
of autism is strongly suppressed. "Hands down," says a
teacher to a child who begins to flap. "We're not a
culture that accepts that," says Taylor. "Fifty percent
of the battle is addressing behavior to look good."
In a classroom with four
teenage boys, the focus is on life skills. Johnathan
learns to type a grocery list, which he and an
instructor will later take shopping. Another boy,
learning to use a camera, asks visitors whether he may
take their picture. He uses the same words and
intonation each time he asks.
Robotic behavior, lack of
emotion and inability to use trained skills outside
school are some of the shortcomings critics attribute to
ABA. A boy who has learned to play Nintendo games at
Alpine, for instance, reverts to simply switching the
game on and off when at home. Proponents concede certain
weak points, but they also note a long record of
results. Says Tristram Smith of the University of
Rochester: "Anything outside ABA is basically
experimental at this point."
CELEBRATE THE CHILDREN
THIS IS NOT A QUIET
SCHOOL. The hallways are filled with the sounds of kids
talking and playing. The walls are festooned with
banners, photographs and artwork. Parents always ask
whether it's too much stimulation, says director Monica
Osgood, but the school wants its students to adapt to
the "real world." Celebrate the Children (CTC), which
costs $47,856 a year--paid by the state--is one of a
growing number of DIR schools. It opened its doors in
Stanhope, N.J., in January 2004 with just three
students. It now has 41, from toddlers to teens, and is
still expanding fast.
CTC emphasizes the
expression of emotion and spontaneous thinking. Rather
than work on a highly specific skill, DIR activities
tend to include complex social interactions that build
many skills at once. In a classroom for
5-to-9-year-olds, eight kids sit in a circle playing a
game in which they pick an activity card and a card
showing a classmate's face. Children earn cheers as they
perform the designated activity with that classmate
(giving Olivia a high five, hugging Alex). Instead of
tangible rewards, shouts of encouragement, a sense of
accomplishment and what Greenspan calls the "warm,
pleasurable feelings" that come from human interaction
serve as a reinforcement for learning. In a classroom of
11-to-14-year-olds, kids are asked to stand in a narrow
row between two strips of blue crepe paper representing
water. The challenge: to arrange themselves in height
order without stepping over the lines and falling "off
the boat." The task combines communication skills,
problem solving and visual, spatial skills. Teachers at
CTC are trained to work on sensory issues and use the
principles of occupational therapy throughout the day,
Osgood explains, rather than in a separate program.
At the core of CTC is
Floortime, one-on-one, child-directed play periods. In
one such session, David, 6, goes down a slide again and
again. Each time he reaches the top of the ladder, a
teacher playfully blocks his way, leading this very
passive child to make eye contact and make his wishes
known. "She wants him to move her hand or say 'Move' and
be intentional," explains Lauren Blaszak, CTC's
assistant director. "She's got an agenda; he doesn't
know it. He keeps going back for more because it's fun."
Building social interactions this way, she says, will
make it easier for David to join circle games at school
and sit at the dinner table at home.
Osgood worked in an ABA
program for six years. "It does a great job with
skills," she says, "but the kids lacked the ability to
think on their feet, to problem solve and to engage
socially." She also feels that the ABA emphasis on
"looking normal" doesn't address the reasons for
behaviors like flapping and rocking: "Those are
organizing strategies to cope with anxiety. Our
philosophy is not to say 'Don't do that.' In DIR, we
respect them for who they are but give them the tools
they need for successful lives." Sometimes literally:
Osgood tosses a boy a Koosh ball when he asks for
something to fiddle with in his hand. Knowing to ask,
she says, is part of learning to regulate oneself.
While Greenspan has
published impressive long-term results, his critics say
there's an absence of controlled, randomized studies. He
is responding with a series of studies just getting
under way at York University in Toronto. Among them is
work that should help illuminate choices for struggling
parents: imaging studies that will compare the brains of
DIR kids with those treated with ABA.
—With reporting by
With reporting by Amy Lennard Goehner