Every
parent runs mental videos of a thousand nightmare scenarios, a
nagging little catalogue of all the mishaps they know or have read
about. For every moment of joy and discovery, there is at least
one of panic or dread: a flu-like fever spiking, a kindergartner
who has slipped away in a crowd.
Parents are prone to think of sudden disasters, not of something
that creeps into the nursery as quietly as a cat, leaving their
child physically intact but slowly stealing away warmth, affection,
interaction, a normal future. For an ever-increasing number of
parents every year, autism becomes the unexpected nightmare.
Autism has long been a mysterious malady, but now there is an epidemic
of autism sweeping the country. Where 20 years ago, autism was
diagnosed in only one in every 10,000 children, the National Institutes
of Health now estimate that autism will affect one in 166 children.
This is fueling emotional battles over the causes of the disorder
and it is creating an urgent need for answers.
Ever-increasing public awareness and a spate of new research findings
provide glimmers of hope that we can understand the disease and
start dismantling the walls that isolate autistic children. UCSD
researchers have been at the forefront of that movement, finding
significant clues that may help us understand the disorder’s
causes and cures.
Autism defies simple categorization. It is part of a larger diagnostic
category, autistic spectrum disorders, which describes people with
a broad range of abilities and disabilities. People with autism
can be so slightly affected that they seem just a little “off,” or
so impaired that they can barely function. What all cases of autism
have in common, though, is that they strike the young, and are
usually diagnosed when children are between 2 and 4 years old.
At first, the children can be as fussy, funny, smiling, crying
and bewildered as any infant. But as they near their first birthday,
things seem not quite right. They may not make eye contact or point.
They often don’t learn to speak or may learn a few words
and then slowly lose them. They are increasingly lost in their
own world, not interacting, not talking. By age 2 or 3, the differences
between autistic and non-autistic children are distinct. They may
hum, rock, or become obsessed with certain objects or toys and
can become easily angered or violent when frustrated or in an unfamiliar
environment.
For decades, autistic children and their parents were the target
of some of psychiatry’s crueler ironies. Autism was discovered
in 1943 by a Johns Hopkins psychiatrist named Leo Kanner, who postulated
that these children were drawn into themselves because of the way
their parents reared them.
A complete lack of evidence tying autism to parenting flaws did
not stop famed psychiatrist Bruno Bettelheim, 10 years later, from
zeroing in on the exact source of autistic dysfunction: the female
half of the parent duo. Specifically, he said that autism was caused
by “refrigerator mothers” who withheld affection from
their children. Bettelheim is now known to have fabricated a lot
of his data to support the conclusions he had already reached.
We now know that autism is a genetically influenced developmental
disorder that is entirely biological, and is not caused in any
way by the child’s upbringing. At the time, though, this
was an authoritative and devastating indictment, one that caused
serious harm.
Most psychiatrists and pediatricians advised parents, without any
evidence, that their autistic children would never get better,
would never be able to love them, would ruin their lives. The best
thing, they often said, was to find a reputable mental institution
and leave their child there.
***
From her office high up in the fortress-like McGill Hall, psychology
professor Laura Schreibman, Ph.D., has a long view of the changes
over the three decades that she has been studying autism at UCSD. “Thirty
years ago, I could talk to a group of pediatricians about autism
and no one in the room knew what I was talking about,” Schreibman
says. “Now when I talk to pediatricians, nearly every one
has a patient who is autistic or knows someone who is.”
She also remembers that parents were still abandoning autistic
children in the ’70s. “It was so strange when I used
to go out to Ventura Hospital and there were all these children
there—3, 4, 5 years old,” Schreibman says. “And
they were going to be there forever.”
The idea that parental behavior was at least partly responsible
for autism died hard. Schreibman recalls an incident in the 1980s,
when she let a reporter interview the parent of one of her autistic
patients. She left the room for a moment and was horrified to return
in time to hear the reporter ask the parent “if she felt
guilty” for causing her daughter’s condition.
In the 1960s, however, some psychologists started using behavioral
therapies in an attempt to reach out to autistic children and teach
them how to communicate. At UCLA, Ivar Lovaas invented a system
called discrete trial training, in which therapists who worked
intensively with autistic children for long hours, focused on only
a few tasks and rewarded good behavior or speech. They found that
they could eventually teach children who seemed to have zero language
skills to speak a collection of words and to express desires. “A
child who wanted to roll a toy car might say ‘car’ or ‘roll,’ and
the therapist would say ‘good talking!’ and give him
a piece of candy,” Schreibman says.
Over the years, the original behavioral therapy was modified in
various ways to be more flexible and appropriate. For example, “instead
of giving candy for saying ‘car’ or ‘roll’ we
would let the child actually roll the car, because that is the
reward they really wanted,” Schreibman says.
The good news was that behavioral therapy was the one treatment
that could ameliorate autism. The bad news was that it most often
didn’t help. In 60 to 70 percent of cases, the therapy will
fail.
“
There’s a lot of variability in autistic children,” Schreibman
says, and consequently she has done a lot of research individualizing
treatments. In a recent study, Schreibman and her colleague Michelle
Sherer, Ph.D. ’02, videotaped young autistic children and
scored their behavior in a number of different areas. “For
instance, we looked at how interactive they are with others, how
much they played with toys, how much rocking they did,” Schreibman
says. Then they worked with the children using one type of behavioral
therapy called pivotal response training. As the therapy progressed,
it became obvious that the children who responded best to the treatment
had shared a common behavioral profile. When it became clear that
some children were not improving, those children were withdrawn
from the trial and given an alternate form of therapy.
With a National Institutes of Health grant that she shares with
Robert and Lynn Koegel at UC Santa Barbara, Schreibman is extending
her research to look at the relative value of other types of
therapy, and says the ultimate goal is to match the children
to the therapies
that can most benefit them.
“
Early intervention is extremely important for getting the best
outcome,” Schreibman says. “You only get one shot in
doing that early intervention and helping these children, so you
want to make sure you are using the right treatment.”
But Schreibman adds a caveat: she describes what she is doing
as a short-term intervention and explains that children can
make much
more progress with long-term intervention. And, she explains,
there is no such thing as a cure at this time.  PAGE2
Christopher Vaughan has written numerous books and articles on medical topics. He lives in the Bay Area.
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