FRONTLINE: Prisoners of Silence - 1/4

Original Air Date: October 19, 1993

Copyright (c) 1993 WGBH Educational Foundation.

(c) 1993
WGBH Educational Foundation
All Rights Reserved

Written, Produced and Directed by
JON PALFREMAN

Associate Producer
MICHELLE NICHOLASEN

Editor
JAMES RUTENBECK

Narrator
WILL LYMAN

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.