WEBVTT

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[music] My name is Eileen Amberg.

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[]I\'m 25 years old. I\'ve been
playing piano since I was 11.

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I have autism, but I can get by. Most

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people with autism don\'t get by.

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Their eyes: their eyes are, like, far

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away. The world is upside down. It\'s like,

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autism\'s like, is a real sad song.
It\'s like a classical piece in

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the key of C minor. Sad
thoughts like, \"It\'s raining

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outside, it\'s dark and it\'s
cloudy and it\'s a storm.\"

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Autism is an alone place...

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It\'s like being separate, you know?

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[music] Hello, I\'m Bill

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Christopher. Perhaps you know me as Father
Mulcahey from the television series,

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M.A.S.H. I\'m also the father
of a boy with autism.

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My son, Ned, is 19 now,
and like all autistic

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people, he has grown up in a world apart
from the rest of us. Autistic people

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spend their entire lives in a private
world that we know very little

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about. You might have images of children sitting
alone in a corner, or banging their heads against

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the wall, but autism strikes each
victim differently. Some are able

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to develop special skills like Eileen,
the woman we just met playing the

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piano. About 5,000 children born each
year in the United States will be

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diagnosed with autism by the age of three.
And unfortunately, autism

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can strike any family. It
could strike your family

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because we don\'t know the cause,
and we don\'t know the cure. The

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textbooks describe autism as a, a
disorder of the brain, a group of

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symptoms like tantruming, rocking,
communication problems, an

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inability to relate to people in an normal way.
The list goes on. But there are many things the

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textbooks don\'t describe, cannot
possibly describe, things that in the

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next half hour, that we\'ll show you.
For instance, what it\'s like

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for families to live with autism,
to have a child, or a sister or a

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brother who may never seem
to look at you, but always

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through you, to a world only their eyes
can see. For the most part, autistic

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people don\'t really live on the same
planet the rest of us do inside their

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minds. They find it very difficult to
focus into our world and share our

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world with us. They\'re very locked into

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almost a prison of their own world.

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[music] That\'s, uh... Mm-hmm.
I\'m very fond of that picture.

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Uh huh... Everyone always
commented on what a

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special little baby she was.
And she really could

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focus on the camera then. If someone was taking a picture of
her, she would focus and she would smile. She had, like, an

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inner glow and at that time we really thought
she was gifted. I can remember myself

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saying it\'s, at one point that if this
kid gets messed up someplace along the

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line, we\'ve got nobody to
blame but ourselves...

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But, uh, I mean we had no inkling
that, uh, what was going on.

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And then, of course, nearing two-and-a half, her personality
really began to decompose. Well, she was, She would

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dart around the apartment. She would line things up
in front of the drum as though it was some kind of

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altar. She would, you know, walk on her toes.
She was walking in circles, and since...

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Hand flapping... Hand flapping also, and this coupled
with the fact that she did not have an really

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typical language. No! Jessica today

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was tantrummy. Fairly dramatically.
These tantrums are something. She bit

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her lip. She bit her lip, yeah. And that\'s
a problem that we need to work on with

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Jessica. And now is the time, before
she gets any older and any bigger.

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There is no cure for autism. And I
describe it to parents as like an FM radio

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station that\'s a little bit off when you drive down the
freeway. Sometimes the world is coming in clearly and

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sometimes it\'s not coming in at all. I think
that underneath it all Jessica has a lot of

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skills that she just doesn\'t show.
And it\'s a matter of

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somehow finding a way to sort of
bring Jessica into our world.

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There we go. There we are. There we are.
There we go. Children who are

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echolalic or repeat a lot...
Okay, we\'re almost done.

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Okay. Now hold it. Holda hold.

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Hold it. People often think that they have much
more language than they have, when in point of fact

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all they\'re doing is making noise. When
you can\'t communicate, you\'re very

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frustrated. Quiet down. Frustration leads
to tantrums, leads to a lot of bad

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behaviors, leads to withdrawal...

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That\'s why the inability

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to, to even make your simplest wants known, I think
about this a lot: what would it be like if I couldn\'t

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communicate with somebody else? I
mean, that would be horrible. That\'s

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why we try to get the children to have verbal
language whenever possible. You say it.

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\"I want music.\" Yes. No, what do
you say when you want to hear

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music...? Do you want

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music...? Do you want

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music? Can you say yes? Yes.

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Yes!...Every spare moment seems to be in

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structuring Jessica\'s day
or her evening, so that she

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can be in touch with this world as
opposed to cloistered within her

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own world. Look over here. A butterfly.
Butterfly. Butterfly,

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right. Good! Show me where the butterfly goes.
Let\'s look. Where does the butterfly go?

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Good, Jessica! Good girl! Real fast!
Good girl. Very good!

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And not everything is therapy. Sometimes

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just enjoying her, uh, and just getting
away from any kind of structured therapy

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is something th-, that I need
something that she needs.

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[sil.] ...Put it on the table.
Hold on! Hold

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on! Thank you! Good girl! Thank you.
Lately, we\'ve been getting her to

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help set the table. These little skills might not
look like so much, but for Jessica they\'re a

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great deal. Maybe my mom
and dad could babysit?

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Well, I don\'t know. Maybe we could just go have
some dinner. It\'s just real undeniable that at

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times autism puts a great deal of strain on
our marriage as well. We both work, we come

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home, Jessica might be having a really
difficult evening, she might be tantruming and

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just, invariably, we\'re going to get on
each other\'s nerves. But I think in the

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long run, on-, the overall picture has
been that it\'s really strengthened us as

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people and it\'s strengthened our
relationship. I would say just as, as a

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message to people with normal children that you
should savor every moment and really appreciate

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what you have with your child. We get
glimpses of that with Jessica, fleeting

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glimpses of contact and relationship.
If I had one wish, it

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would be that she would be released
from that prison and be the person

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that I know that she could be.
My hopes are,

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are pretty much what Marilyn\'s
are: to have her enjoy

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childhood the way other children enjoy their childhood,
to be able to play and, uh, uh, the way other

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children play, and be able to talk to me.
Um, to be able to ask me

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questions. To realize the
kinds of dreams that I

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had for her when she was born. To see her

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in uh, a school play, uh, in an eln-,
elementary school the way other

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parents do. To see her through high
school graduation and into college,

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and to watch her become more independent
and develop friendships and, and

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relationships of her own. And to
live a f-, a fully independent life.

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[sil.] I remember when
my son Ned was young. My

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wife Barbara and I also had a lot of
dreams. When some of those dreams

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didn\'t come true, we learned to
dream new dreams, to set new

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goals. And we have seen progress. Despite
the fact that many people with autism are

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mentally retarded, they can learn skills
that will help them become a part of our

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world. Education is one of the few
treatments we have for autism

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until research leads us to a cure.

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The monkeys on the monkey island! Autism
can set children apart if we let it,

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but what we\'re doing in the educational
system we hope, will set them

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less apart. When we go on
outings or trips we try

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to include the non-handicapped peers.
There\'s more flamingos over there!

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So that my children then
have appropriate role

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models, somebody that will guide them and
lead them, maybe point things out to them,

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maybe even correct behavior. They
see someone acting appropriately,

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just without realizing it, they\'re in fact,
imitating their peer. They are then learning

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appropriate behaviors. The non-handicapped
children are not made aware

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on a daily basis that these are
autistic students. What they know is

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that these are students who need extra help,
who have difficulty learning and difficulty

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speaking and difficulty relating.
That they just need a little extra.

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Time for good... Good...! M- ... morning!

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Good morning! Autistic
children do learn. It\'s a

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challenge for everybody working with that child to see
how much, in fact, you can teach him. This is my...

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Nose. Nose! This is my... When we use a
system of behavior modification, good

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behaviors are rewarded. As these
students get older, their educational

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program will change to
include tasks that are, in

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fact, important in getting a job.
We have people with

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autism. We need to treat them as normally
as possible. We need to accept them

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as much as possible, and we need to make accommodations
for them as much as possible. We hope that the

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education that we provide for them will enable
them to be sitting next to you in a job.

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A, Y! We don\'t cure. What we

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hope for is that while we educate on a daily
basis, somebody in their lab is working on

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finding a cause, is working on a cure.
Unfortunately, there\'s

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no cure for autism now. Anyone who
promises a cure is just pedalling false

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hopes. I\'m often asked why we don\'t know more about
autism and why we haven\'t come up with better

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treatments. The reason for that is
that autism is not a high-profile

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disease. Our ignorance of autism is gonna
last until people really get behind it with

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research. Up \'til now there\'ve been
very few doctors concentrating or

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specializing on the disease like myself. We
believe there\'s one type where there\'s a

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familial or genetic factor, and another
type where something like a virus

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comes along and zaps the brain of the developing
infant, and then you wind up with the

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same clinical picture, same disease... New research
is coming along. And I\'m sure we\'re gonna lick this

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disease just like we\'ve licked
a whole lot of other diseases

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Throw it back, Sergio! I used to take Ned

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running in this canyon everyday. It\'s just a
few minutes from our house. That was when Ned

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lived at home. He doesn\'t anymore.
When Ned turned 13 he developed

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aggressive behaviors that became
impossible for us to live with. When

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families live with autism day after day,
sometimes out-of-home placement is the

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best option. [music]

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Placement of Chris is not a question
of loving him or not loving

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him. There was too many other parts to the
equation. It was the other children, it was our

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marriage, it was Chris. We had
to make the decision that Chris

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had to live someplace else.

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[music] Chris, how many fish are
you going to get me for Christmas?

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Fourteen! No. I don\'t want 14. Um,

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four. Even though Chris doesn\'t live
here, I still think of him as my

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brother. I love Chris and most of the time we really get along
together. Okay. Chris not living at home seems natural to me

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because I always grew up with
him living somewhere else.

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I like living here at Blackhawk and
I feel Blackhawk is my home. It is.

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We knew we couldn\'t go back to
the way it was when he was home.

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Um, there was a lot of guilt, too.
That first week

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back, I looked around me and thought, this
is how normal people live. Because you

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forget. You forget that normal people... Yep.
Don\'t have to cope with the, the kinds of

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things we were coping with
on a day-to-day basis. Yeah.

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Chris lives in a residential setting
with five other developmentally disabled

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adults. There\'s a lot of training that
takes place in Chris\' residence. The

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staff work with them 24 hours a day. Yeah.
It\'s not always gonna come out

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perfect even though you try. It\'s a little, it\'s a little raw in the middle. A little raw
in the middle? Okay why don\'t you let it cook for another, uh, couple of minutes, then.

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Their goal, I think, is ultimately to try
to get them into the least restrictive

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environment so they can be as self-sufficient
as they possibly can. How\'re you doing,

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Hazel? I\'ve never seen you for a long time.
I would like

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to work at a pet store or fish store,

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and know about fish more, know about

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rabbits more. I designed the rabbit hutch

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and my dad built it and
then I brought it over in

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pieces and put it together here. How do you

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like your new hutch? Fine. How do you like

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box? Terrible! Placement isn\'t right for

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everybody. It was the
right solution for us.

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Chris is happy. Probably for the
first time in his life. Uh,

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Pat sees, picks him up every Saturday and brings
him home. For example, last night I tried to

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call him and wanted to pick him up
last night so I wouldn\'t have to do it

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today and he said, uh, no, he had things

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to do and he didn\'t want to be home
last night. Hi, guy! How\'re you doin\'?

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Fine. He lives close enough, only
about ten minutes away from here.

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So did you go anywhere special this week,
you know like on a field trip with Brandy?

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Huh? Uh, Wednesday, we, um, went
to a field trip. We try to keep

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Chris involved in the family. I like my

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mom because she, she\'s a nice

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lady, my mom\'s a nice lady. Go up higher! I

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like my father. He, he talks to me, he

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teases me. Okay. Wait. I\'ll wait.
I can\'t move with you standing on

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it. You\'re too heavy. It\'ll
break and I will kill myself.

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No, you won\'t. Just break a
few bones, maybe. A piranha.

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A piranha? Big, spooky.
I was 13 when Chris was

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placed, and at the very beginning I felt
that it was my fault. But my mother

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assured me that I needed to be away from him.
Just as much as he needed to be away from

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us and in a learning environment.
When Chris was really young he could

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be really terrible. He had a thing
about kicking doors and walls

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in. And every door in our house...
Has a hole in it. Had a hole in it.

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And he would be up at four, five
o\'clock in the morning jumping around.

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There was a knock on the front door. We
thought Chris was in his room playing

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or sleeping. And opened the front
door and there he was stark naked.

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He would take books out of the shelves and,
and smear feces, and that, all my books.

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It was very difficult to find sitters. I
don\'t think we\'d ever had a vacation.

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No. Couldn\'t. From, hi-, from him.
He had to go. If he

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hadn\'t, I don\'t think it would\'ve lasted. We would\'ve
ended up divorced and there would\'ve been a lot more

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problems with the other kids. He
was getting really violent with my

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mom. And he was actually
pushing her and shoving

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her up against it, and I just, I guess
all the… the things that had eaten at

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me from when he was younger, really young,
it just all came out and I r-, just remember

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grabbing him, lifting him off, up off the
ground and throwing him up in a corner.

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So I think in placing Chris was
really saying we loved him,

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but we also loved our other children too.
Uh, that week, probably,

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I can\'t, it was like, was like losing a

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child...

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And somehow I had failed...
Yet he was, he was,

00:19:35.000 --> 00:19:39.999
he was still alive, it was, I, I
think was worse than a death.

00:19:40.000 --> 00:19:48.000
[music] Walk like an Egyptian...?
Seven years

00:19:50.000 --> 00:19:54.999
later, I know it was the best decision
we could\'ve made. He can actually hold a

00:19:55.000 --> 00:19:59.999
conversation with me or with anybody. And

00:20:00.000 --> 00:20:04.999
I love him now. I loved him then,
but it\'s just, it\'s so much

00:20:05.000 --> 00:20:09.999
easier. Chris today is probably a better brother
to Lori than I am. And, I mean, they\'re

00:20:10.000 --> 00:20:14.999
almost friends. She never saw the

00:20:15.000 --> 00:20:19.999
tantrums, the fighting, so she, she never had that
vision of him. That makes it a lot easier for

00:20:20.000 --> 00:20:24.999
her to deal with him.
Autism really isn\'t a big

00:20:25.000 --> 00:20:29.999
case for me. You wanna get two fish?
Yeah. Little dinky, uh... Four!

00:20:30.000 --> 00:20:34.999
Okay, I\'ll get you five fish.
Chris not living here

00:20:35.000 --> 00:20:39.999
doesn\'t mean we don\'t love him a lot.
Because we do, he just

00:20:40.000 --> 00:20:48.000
moved away. And they grow so big! No,
they don\'t. I think one of the most

00:20:50.000 --> 00:20:54.999
difficult things about autism is that it
rarely gets better. No matter how hard we

00:20:55.000 --> 00:20:59.999
try. When we deal with autistic behaviors
day after day, year after year,

00:21:00.000 --> 00:21:04.999
autism can be exhausting. Solutions are
not obvious. And all families must

00:21:05.000 --> 00:21:09.999
deal with the problems of
autism in their own way.

00:21:10.000 --> 00:21:18.000
[music] Greg will change from one bizarre
behavior to another. He may chew his knuckles

00:21:20.000 --> 00:21:24.999
raw. Then he may use whole bottles of hand
lotion and finger paint on the mirrors.

00:21:25.000 --> 00:21:29.999
It\'s a weird type of thing and all I can
say is we just don\'t live a normal life.

00:21:30.000 --> 00:21:38.000
[music] Good morning. Good morning.
Want to go to school?

00:21:50.000 --> 00:21:54.999
School. Let\'s get dressed.
Shall we go to school? School.

00:21:55.000 --> 00:21:59.999
Good morning. Okay. Let\'s get your
sweater....stand up... The challenge of

00:22:00.000 --> 00:22:04.999
autism is doing all the things you do for a

00:22:05.000 --> 00:22:09.999
toddler that you\'re still
doing for a 23 year-old.

00:22:10.000 --> 00:22:14.999
When Greg was about six, a social worker

00:22:15.000 --> 00:22:19.999
asked us, \"Well, you know,
Greg\'s gonna be older

00:22:20.000 --> 00:22:24.999
soon. Where are you going
to put him?\" And that

00:22:25.000 --> 00:22:29.999
was very traumatic. And what I did
was I walked out of counseling

00:22:30.000 --> 00:22:34.999
and never went back. Pull it up.
We weren\'t emotionally

00:22:35.000 --> 00:22:39.999
ready to let him go. Good job!
Put your other sock on.

00:22:40.000 --> 00:22:44.999
You gonna go on the bus?
You gonna take the bus...

00:22:45.000 --> 00:22:49.999
Bus... to, to? School. School! Alright!
We have to make your lunch.

00:22:50.000 --> 00:22:54.999
My way of thinking, if we\'d
have given in to early age

00:22:55.000 --> 00:22:59.999
placement, I would\'ve been giving up. I
thought that, th-, I-, possibly he could be

00:23:00.000 --> 00:23:04.999
helped and I wanted to be able to help him.

00:23:05.000 --> 00:23:09.999
[sil.] If Greg was, say,

00:23:10.000 --> 00:23:14.999
handicapped, he, he had a crippled leg, you
could se-, pinpoint certain things. You

00:23:15.000 --> 00:23:23.000
know, you could teach him to w-, to be able to walk. Greg?
But there\'s, u-, it\'s hard to, when somebody asks me

00:23:25.000 --> 00:23:29.999
what do they accomplish at school and it\'s
hard to really come out and pinpoint things.

00:23:30.000 --> 00:23:34.999
Everything he does is, is,
ver-, is a very hard task.

00:23:35.000 --> 00:23:39.999
Okay: Greg. What do you drink water from?

00:23:40.000 --> 00:23:44.999
Sh. What is this? Water. Tater.
Cricket. C-, c-.

00:23:45.000 --> 00:23:49.999
Cup. Cup. What do you drink water from?
Cup. A cup! Can drink something. Good.

00:23:50.000 --> 00:23:54.999
Lisa. At the end of the
day, Greg is dropped off

00:23:55.000 --> 00:23:59.999
and I never know when he comes in
the house if he\'s gonna come in

00:24:00.000 --> 00:24:04.999
calm or if he\'s gonna come
in throwing a tantrum.

00:24:05.000 --> 00:24:09.999
Living with autism is completely

00:24:10.000 --> 00:24:14.999
unusual. You can\'t get
a, a babysitter for a

00:24:15.000 --> 00:24:19.999
22 or 23 year-old boy. We\'re stuck
in the house a lot. What else?

00:24:20.000 --> 00:24:24.999
Vegetables? Vegebles. You\'re kidding?
Really?

00:24:25.000 --> 00:24:29.999
You\'re gonna eat this? We\'ll see if he eats it. You want
dressing? It\'s been really hard living with a brother who has

00:24:30.000 --> 00:24:34.999
autism. I almost resent
him, but yet never to the

00:24:35.000 --> 00:24:39.999
point of where I would actually hate
him or despise him because no matter

00:24:40.000 --> 00:24:44.999
what, he\'s still my brother.
But a lot of times,

00:24:45.000 --> 00:24:49.999
when I had things going on at
school, or things that I would have

00:24:50.000 --> 00:24:54.999
like my parents to come, they could\'ve,
they couldn\'t have, because one of them had

00:24:55.000 --> 00:24:59.999
to stay and watch with Greg or both
had be home. Just a little. Oh!

00:25:00.000 --> 00:25:04.999
Too much. Well, at first, you know,
when I was little I really didn\'t

00:25:05.000 --> 00:25:09.999
understand. I mean, \'cause I\'d see him and he\'d do these weird
things, you know, with his hands and stuff, and sit there and

00:25:10.000 --> 00:25:14.999
wiggle himself and stuff like that. And I started, like, looking
at him and like, strange things. And then when I got about,

00:25:15.000 --> 00:25:19.999
like six years old, um, my parents started
telling me with it, and I still didn\'t

00:25:20.000 --> 00:25:24.999
understand \'til I was like nine or ten.
Throw the ball. There you go!

00:25:25.000 --> 00:25:29.999
Autism is very isolating, but yet he
has his needs. He likes people to

00:25:30.000 --> 00:25:34.999
hug him and to show affection, to, to
care for him. He\'s just like anybody

00:25:35.000 --> 00:25:39.999
else when it comes down to that aspect of it.
Now I have to wash it. What do you want?

00:25:40.000 --> 00:25:44.999
Shampoo. I am giving you a shampoo.
What? Shampoo. Okay.

00:25:45.000 --> 00:25:49.999
I guess that the, the answer to ha-, living with
autism is to have a strong person in the family,

00:25:50.000 --> 00:25:54.999
somebody that\'s kind and patient and can handle
it. And that \'s my wife. You know. Without her, I

00:25:55.000 --> 00:25:59.999
couldn\'t have made it.

00:26:00.000 --> 00:26:04.999
Dry. Okay. Get your deodorant. Destination.

00:26:05.000 --> 00:26:09.999
Destinations. \'Cause I
even resent him at times.

00:26:10.000 --> 00:26:14.999
You know. She doesn\'t, but I do. Certain times
that I do. I\'ve resented the fact that he\'s not

00:26:15.000 --> 00:26:19.999
normal. And, uh, I don\'t
want to say it, but I do.

00:26:20.000 --> 00:26:24.999
Everybody in the family
tells me, well you can\'t be

00:26:25.000 --> 00:26:29.999
mean to him. \'Cause I
take care of him. Mm-hm.

00:26:30.000 --> 00:26:34.999
Well, I would hope eventually
that Greg would be placed into a

00:26:35.000 --> 00:26:39.999
home to give my parents some free time
and to allow them to en-, to enjoy life.

00:26:40.000 --> 00:26:44.999
We\'re gettin\' to the point that we
wish that this time, this year, that

00:26:45.000 --> 00:26:49.999
he does make it to one of the homes so that he
can stay there in one of the places. \'Cause

00:26:50.000 --> 00:26:54.999
we\'re just gettin\' to the point that we
can\'t handle it now. We\'ve been looking for

00:26:55.000 --> 00:26:59.999
placement for about, approximately five years. And we\'ve
been looking and hoping for placement, but nothing

00:27:00.000 --> 00:27:04.999
appropriate has come up.
After 23 years, we know

00:27:05.000 --> 00:27:09.999
placement\'s gonna be best for everybody
in the family. Got that one. Next

00:27:10.000 --> 00:27:14.999
one. We love Greg very
much, but it\'s time for

00:27:15.000 --> 00:27:19.999
Greg to get on with his life, as
well as for us to get on with ours.

00:27:20.000 --> 00:27:28.000
[music] Autism

00:27:30.000 --> 00:27:34.999
occurs worldwide in people of
all races, ethnic origins, and

00:27:35.000 --> 00:27:39.999
social backgrounds. It happened
in my family. It could happen in

00:27:40.000 --> 00:27:44.999
yours. At least 350,000
people in the United

00:27:45.000 --> 00:27:49.999
States suffer from autism. We\'ve
just met a few of them: Jessica,

00:27:50.000 --> 00:27:54.999
Chris, and Greg locked in a
prison of their own. And right

00:27:55.000 --> 00:27:59.999
now, their sentence is for life.
But there is hope. Our

00:28:00.000 --> 00:28:04.999
hope for autism lies in research.
Until we find a cure for

00:28:05.000 --> 00:28:09.999
autism, these people will
remain in a world apart.

00:28:10.000 --> 00:28:15.000
[music]