ANNOUNCER: These children cannot speak.
No one knows what's going on inside their heads.
They're autistic.
Tonight on FRONTLINE, the explosive story of a revolutionary method of communication.
Dr. Biklen: Here was a means of expression for people who lacked expression
and here was a way that you could find out what people were feeling and
what they were thinking.
ANNOUNCER: FRONTLINE investigates facilitated communication
--the theory, the practice and the controversy.
PHIL WORDEN: God, it's really true. This stuff is bogus.
You know, it's just so clear and so unmistakable
as I was sitting there watching this.
ANNOUNCER: Tonight on FRONTLINE, "Prisoners of Silence."
Funding for Frontline is provided
by the Corporation for Public Broadcasting
and by annual financial support from viewers like you.
This is FRONTLINE
CHILDREN: [singing] If you're happy and you know it, clap your hands
If you're happy and you know it, clap your hands
If you're happy and you know it--
NARRATOR: Every American child knows this song.
They can feel happy and they know what it is like to feel happy.
But to children growing up
with the strange condition of autism,
like these at the Boston Higashi School,
the words may not mean much at all.
Something has gone wrong with their developing brains.
The children have a faraway look.
Generally they shun human contact.
The mysterious condition of autism
affects close to 400,000 Americans.
Most have little or no speech.
Eighty percent are mentally retarded.
While the condition can be treated,
there's no cure.
Until three years ago,
this was the generally accepted theory of autism.
But then a radical and controversial new technique
called "facilitated communication" took America by storm.
Today, thanks to facilitated communication,
Jeff Powell, once written off as profoundly retarded,
sits in class doing algebra.
[applause]
Profoundly autistic Ben Lehr can't speak,
but can type his thoughts to an audience of people.
Dr. DOUGLAS BIKLEN: [reading Ben Lehr's words] "Feel like you need
patient friends like Michael. They fight for me."
[applause]
NARRATOR: Professor Douglas Biklen of Syracuse University thinks
it is the most important breakthrough in autism ever
and is promoting it enthusiastically.
The theory of facilitated communication claims
that many, perhaps most autistic people,
are not retarded, but have intelligent minds
imprisoned in bad bodies.
FACILITATOR: Are, either, for-- good.
Go ahead. Delete. Did you want to delete that?
NARRATOR: Biklen argues that autistic individuals
like Ellen have many things to say
but are unable to say them
because her body will not do what her mind wants.
But with a little help,
or facilitation -- holding her hand,
wrist or elbow --
her body's often jerky movements can be smoothed out,
allowing her to type letters on a keyboard.
FACILITATOR: --TALK-- I, N, G--
NARRATOR: When Douglas Biklen discovered the method
during a visit to Melbourne, Australia,
he realized that everything known about autism might be wrong.
Dr. BIKLEN: I knew that I had seen
something terribly important.
Here was a means of expression
for people who lacked expression
and here was a way that you could find out
what people were feeling and what they were thinking.
And, you know, these were people
who had a disability the very definition of which
suggested that the people might not have feelings
and certainly no ability to empathize
with other people's feelings.
This was a disability the very definition of which
was that people lacked imaginative ability.
Well, I mean, you know, how do you do
higher order mathematics without an imagination?
How do you write poetry without an imagination?
So it was quite clear that this was
a means of expression that was revolutionary.
NARRATOR: The O.D. Heck Center for the Developmentally Disabled
in Schenectady, New York, runs a large autism program.
Before facilitated communication,
the staff never imagined that any
of their nonverbal clients might be of normal intelligence.
But then speech pathologist Marian Pitsas
heard about the new technique being promoted at Syracuse University.
Together with her colleague Jimmy Maruska,
she went to find out how it worked.
MARIAN PITSAS: Three of us went for the training first
and we rapidly trained everyone in our program,
all three shifts, and had many, many clients typing
at varying levels and with varying degrees of success
but it spread very, very quickly.
I thought it was wonderful.
At last we were going to-- we were going to
help these people communicate.
We would find out what they really understood.
JIMMY MARUSKA: Before, they were just another person
that I was helping with and teaching them
some basic skills to help them survive out there,
but then here along comes a person that can share their thoughts,
that can talk to me.
I can talk to them.
We can have a conversation that's relevant.
It was great. It was really super.
I mean, you couldn't ask for anything more.
All of a sudden, these people that
we always treated as low-functioning
were right up there with us.
NARRATOR: Ray Paglieri,
the director of the autism program,
realized the enormous implications
of the typed messages his clients were now producing.
RAY PAGLIERI: I was thinking
that certainly a large number,
if not all of the folks that we were working with
may, in fact, have normal intelligence.
I mean, we had people typing sentences,
paragraphs, alike.
We were thinking here we were going to
redefine the whole notion of what autism is all about.
We trained the rest of our staff, okay?
We literally were encouraging people
to work with everybody in the program.
We were training as many people as we could,
training people out in the community.
I mean, we were excited.
We looked at it as literally a breakthrough technique.
NARRATOR: So did the media.
ANNOUNCER: [January 25, 1992] PrimeTime. Now, from New York, Diane Sawyer.
DIANE SAWYER: And now a story about hope.
For decades, autism has been a dark mystery,
a disorder that seems to turn children in on themselves,
against the world.
Tonight, however, you are going to see something
that has changed that. Call it a miracle.
Call it an awakening.
NARRATOR: Word of the new miracle
of facilitated communication spread rapidly.
Parents told teachers and teachers told parents.
TEACHER: The system that carries matter
from one place to another?
NARRATOR: Many schools embraced it.
At Edward Smith Elementary School in Syracuse,
children previously thought to be retarded
now sat in classes with their peers,
receiving age-appropriate instruction,
studying math, studying biology.
TEACHER: Plasma is correct PJ, nice job.
Dr. BIKLEN: Maybe you can say what you want to point to.
NARRATOR: A large group of individuals had,
in Biklen's view, been greatly underestimated simply
because they could not speak or control their bodies.
Dr. BIKLEN: Why don't you show us and then you try to say it.
That's good.
Dr BIKLEN: I had always believed that it was important
to treat people as competent,
even though they didn't give off the signs of it.
To me,that was just the-- the humane thing to do.
That was the sensitive thing to do.
The wonderful thing about facilitated communication
is that once a person begins to communicate,
you can ask the person, "What's going on here?"
Dr BIKLEN: Excellent! You got it right.
NARRATOR: The words that emerged
from the electronic communicators and letter boards
spoke of loneliness,
of being trapped in a prison of silence,
of slavery and of freedom.
For Biklen, a simple technique had redefined
an entire group of disabled people.
Jeff Powell, for example, is no longer seen
by his teachers and peers as mentally retarded.
He has become a celebrity at Baker High School in Syracuse.
They stress he's an academically gifted student
who writes poetry for the school yearbook.
But some people had their doubts
about facilitated communication.
Dr. Howard Shane has devoted his life
to helping disabled nonverbal people to communicate.
At Boston Children's Hospital,
he runs a center which finds technological solutions
enabling disabled people like Tony Bonfiglio
who has cerebral palsy, to communicate independently.
Dr. SHANE: We have this saying in our center
that no person is too physically disabled
to be unable to communicate.
The slightest movement, winking of an eye,
moving of an eyebrow, sipping and puffing on a switch--
on--on a straw would control a switch--
finding that subtle movement is all you need
to be able to control the technology.
VOICE SYNTHESIZER: Yes, I have made many good friends.
NARRATOR: Thanks to computers, thousands of nonverbal people
can express themselves independently.
With such equipment available, Shane questioned,
why should autistic people need another person to hold their hands?
Biklen says autism is special.
Dr. BIKLEN: Last week, I had conversations
with several people.
One person said, "It slows me down.
It helps me by slowing me down.
When I'm not slowed down, I get garbage.
I get unwanted words. I get a lot of letters strung together
that don't make a word. When I'm slowed down,
I can type what I want."
NARRATOR: But critics like Shane were amazed
at the sophisticated output.
Autistic children of 5 and 6 produced
perfectly spelled sentences.
Where had they learned to read and write?
A difficult question had to be faced.
Was the typing coming from the autistic individual
or from the facilitator?
Dr. SHANE: The outcomes that were being reported
were just so far out of line
with what anyone had ever found.
They're communicating in grammatically complete sentences.
They're marking the tense correctly.
Their spelling is accurate.
They have insights that go far beyond their years.
Dr. BIKLEN: [reading] "Understanding is so hard.
I long to see it real.
I just hope, really hope, it's not a lost ideal.
As I said, many of the accounts coming from people with--
who are using facilitated communication as their means of expression
have to do with loneliness.
Dr. BILKEN: I think it's rather obvious that the way
in which these children learned to read
was the way that most of us learned to read--
that is, by being immersed in a language-rich environment.
You go into good pre-school classrooms
and you'll see words everywhere, labeling objects,
labeling pictures.
You look at Sesame Street.
We're introducing words.
We're giving people whole words.
We're also introducing them to the alphabet.
On the other hand, having said that,
it does seem to me that there's something unusual going on here
when you see a number of children with autism
who seem to have precocious ability.
That is, they know a lot of words
and very often, you know, quite long words.
You know, how is this? Is there something
about the disability that allows them to focus in on language
and to be able to put together words?
NARRATOR: A very small number of autistic people,
"savants," have spectacular abilities in narrow areas.
EXPERIMENTER: The 17th of December, 1974.
SAVANT: That was a-- a Tuesday.
EXPERIMENTER: The 10th of June, 1917.
SAVANT: It-- it was a-- a Sunday.
EXPERIMENTER: The 1st of March, 2044.
SAVANT: It-- it will be a Tuesday.