My name is Eileen Ehrenberg. I'm 25 years old. I've been playing piano since I was 11.
I have autism but I can't get by. Most people with autism don't get by.
Your eyes, your eyes are like far away. Your world is upside down.
It's like autism is a real sad song. It's like a classical piece in the key of C minor.
Sad thoughts like it's raining outside, it's dark, it's cloudy, it's a storm.
Autism is in a long place. It's like being separate, you know.
Hello, I'm Bill Christopher. Perhaps you know me as Father Mulcahy from the television series MASH.
I'm also the father of a boy with autism. My son Ned is 19 now and like all autistic people,
he has grown up in a world apart from the rest of us. Autistic people spend their entire lives
in a private world that we know very little about. You might have images of children sitting alone
in a corner or banging their heads against a wall, but autism strikes each victim differently.
Some are able to develop special skills like Eileen, the woman we just met playing the piano.
About 5,000 children born each year in the United States will be diagnosed with autism by the age of 3.
And unfortunately, autism can strike any family. It could strike your family because we don't know the cause
and we don't know the cure. The textbooks describe autism as a disorder of the brain, a group of symptoms
like tantruming, rocking, communication problems, an inability to relate to people in a normal way.
The list goes on, but there are many things the textbooks don't describe, cannot possibly describe,
things that in the next half hour we'll show you. For instance, what it's like for families to live with autism,
to have a child or a sister or a brother who may never really seem to look at you, but always through you,
to a world only their eyes can see.
For the most part, autistic people don't really live on the same planet the rest of us do, inside their minds.
They find it very difficult to focus into our world and share our world with us.
They're very locked into almost a prison of their own world.
That's a very fond of that picture.
Everyone always commented on what a special little baby she was.
And she really could focus on the camera then. If someone was taking a picture of her, she would focus and she would smile.
She had like an inner glow and that time we really thought that she was gifted.
I can remember myself saying it's at one point that if this kid gets messed up someplace along the line, we've got nobody to blame but ourselves.
But I mean we had no inkling of what was going on.
And then of course nearing two and a half, her personality really began to decompose.
She would dart around the apartment.
She would line things up in front of the drum as though it was some kind of altar.
She would walk on her toes, she was walking in circles.
Hand flapping.
Hand flapping also and this coupled with the fact that she did not have a really typical language.
Jessica today was tantruming fairly dramatically.
She's tantrumed.
She better live.
And that's a problem that we need to work on with Jessica.
And now is the time before she gets any older and any bigger.
There is no cure for autism.
And I describe it to parents, it's like an FM radio station that's a little bit off when you drive down the freeway.
Sometimes the world is coming in very clearly and sometimes it's not coming in clearly at all.
I think that underneath it all Jessica has a lot of skills that she just doesn't show.
And it's a matter of somehow finding a way to sort of bring Jessica into our world.
There we go.
Children who are echolalic or repeat a lot.
Okay, we're almost done.
Hold it.
Hold it.
People often think that they have much more language than they have when in fact all they're doing is making noise.
When you can't communicate, you're very frustrated.
Frustration leads to tantrums, leads to a lot of bad behaviors, leads to withdrawal.
That's why the inability to even make your simplest wants known.
I think about this a lot.
What would it be like if I couldn't communicate with somebody else?
I mean that would be horrible.
That's why we try to get the children to have verbal language whenever possible.
You say, I want music.
No.
What do you say when you want to hear music?
Do you want music?
No.
Do you want music?
Can you say yes?
Yes.
Yes.
Every spare moment seems to be in structuring Jessica's day or her evening so that she can be in touch with this world as opposed to cloistered within her own world.
Over here.
A butterfly.
A butterfly.
A butterfly, right.
Show me where the butterfly goes.
Let's look.
Where does the butterfly go?
Good girl.
Very good.
And not everything is therapy.
Sometimes just enjoying her and just getting away from any kind of structured therapy is something that I need, something that she needs.
Hold on.
Hold on.
Thank you.
Thank you.
Lately we've been getting her to help set the table.
These little skills might not look like so much, but for Jessica they're a great deal.
Maybe my mom and dad could babysit.
Well, maybe we could smoke a dinner.
It's just real undeniable that at times autism puts a great deal of strain on our marriage as well.
We both work.
We come home.
Jessica might be having a really difficult evening.
She might be tantruming.
And just invariably we're going to get on each other's nerves.
But I think in the long run the overall picture has been that it's really strengthened us as people and it's strengthened our relationship.
I would say just as a message to people with normal children that you should savor every moment and really appreciate what you have with your child.
We get glimpses of that with Jessica, fleeting glimpses of contact and relationship.
If I had one wish it would be that she would be released from that prison and be the person that I know that she could be.
My hopes are, pretty much what Marilyn's are, to have her enjoy childhood the way other children enjoy their childhood.
To be able to play the way other children play, to be able to talk to me, to be able to ask me questions,
to realize the kinds of dreams that I had for her when she was born, to see her in a school play in an elementary school the way other parents do,
to see her through high school graduation and into college and to watch her become more independent and develop friendships and relationships of her own and to live a fully independent life.
I remember when my son Ned was young, my wife Barbara and I also had a lot of dreams.
When some of those dreams didn't come true we learned to dream new dreams, to set new goals and we have seen progress.
Despite the fact that many people with autism are mentally retarded, they can learn skills that will help them become a part of our world.
Education is one of the few treatments we have for autism until research leads us to a cure.
Autism can set children apart if we let it, but what we're doing in the educational system we hope will set them less apart.
When we go on outings or trips we try to include the non-handicapped peers so that my children then have appropriate role models.
Somebody that will guide them and lead them, maybe point things out to them, maybe even correct behavior.
They see someone acting appropriately just without realizing it. They're in fact imitating their peer.
They're then learning appropriate behaviors. The non-handicapped children are not made aware on a daily basis.
These are autistic students. What they know is that these are students who need extra help, who have difficulty learning and difficulty speaking and difficulty relating.
They just need a little extra.
Type four, good morning.
Autistic children do learn. It's a challenge for everybody working with that child to see how much in fact you can teach him.
When we use a system of behavior modification, good behaviors are rewarded.
As these students get older, their educational program will change to include the vocational tasks that are in fact important in getting a job.
We have people with autism. We need to treat them as normally as possible. We need to accept them as much as possible and we need to make accommodations for them as much as possible.
We hope that the education that we provide for them will enable them to be sitting next to you in a job.
A-Y.
We don't cure. What we hope for is that while we educate on a daily basis, somebody in their lab is working on finding a cause, is working on a cure.
Unfortunately, there's no cure for autism now. Anyone who promises a cure is just peddling false hopes.
I'm often asked why we don't know more about autism and why we haven't come up with better treatments.
The reason for that is that autism is not a high profile disease. Our ignorance of autism is going to last until people really get behind it with research.
Up till now, there have been very few doctors concentrating or specializing on the disease like myself.
We believe there's one type where there's a familial or a genetic factor and another type where something like a virus comes along and zaps the brain of the developing infant
and then you wind up with the same clinical picture, same disease.
New research is coming along and I'm sure we're going to lick this disease just like we've licked a whole lot of other diseases.
I used to take Ned running in this canyon every day. It's just a few minutes from our house.
That was when Ned lived at home. He doesn't anymore. When Ned turned 13, he developed aggressive behaviors that became impossible for us to live with.
When families live with autism day after day, sometimes out of home placement is the best option.
Placement of Chris is not a question of loving him or not loving him. There was too many other parts of the equation.
It was the other children, it was our marriage, it was Chris. We had to make the decision that Chris had to live someplace else.
Chris, how many fish are you going to get for Christmas? 14. No, I don't want 14. Four.
Even though Chris doesn't live here, I still think of him as my brother. I love Chris and most of the time we really get along together.
Chris not living at home seems natural to me because I always grew up with him living somewhere else.
I like living at Black Hawk and I feel Black Hawk is my home. It is.
We knew we couldn't ever go back to the way it was when he was home.
There was a lot of guilt too. That first week back, I looked around me and thought, this is how normal people live.
Because you forget. You forget that normal people don't have to cope with those kinds of things that we were coping with on a day to day basis.
Chris lives in a residential setting with five other developmentally disabled adults.
There is a lot of training that takes place in Chris's residence. The staff work with him 24 hours a day.
They're not always going to come out perfect. A little raw in the middle.
A little raw in the middle? I want you to let it cook for another couple of minutes then.
Their goal I think is ultimately to try to get them into the least restrictive environment so they can be as self-sufficient as they possibly can.
How are you doing Hazel? I've never seen you for a long time.
I would like to work at a fish store and know about fish more, know about rabbits more.
I designed the rabbit hutch and my dad built it and then I brought it over in pieces and put it together here.
How do you like your new hutch? Fine.
How do you like that box? Terrible.
Placement isn't right for everybody. It was the right solution for us.
Chris is happy probably for the first time in his life.
Pat picks him up every Saturday and brings him home.
For example last night I tried to call him and wanted to pick him up last night.
I wouldn't have to do it today and he said no he had things to do. He didn't want to come home last night.
He lives close enough, only about 10 minutes away from here.
So did you go anywhere special this week? You know like on a field trip with the meeting?
On Wednesday we went to a field trip.
We try to keep Chris involved in the family.
I like my mom because she's a nice lady. My mom is a nice lady.
I like my father. He talks to me, he teases me.
Wait. I can't move when you're standing on it. You're too heavy.
It'll break and I will kill myself.
Just break a few bones maybe.
A piranha. Big, goopy.
I was 13 when Chris was placed and at the very beginning I felt that it was my fault.
But my mother assured me that I needed to be away from him.
Just as much as he needed to be away from us in a learning environment.
When Chris was really young he could be really terrible.
He had a thing about kicking doors and walls in. And every door in our house had a hole in it.
And he would be up at 4, 5 o'clock in the morning jumping around.
There was a knock on the front door. We thought Chris was in his room playing or sleeping.
And opened the front door and there he was stark naked.
He would take books out of the shelves and smear feces in that. All my books.
It was very difficult to find sitters. I don't think we'd ever had a vacation.
No, we couldn't. He had to go. If he hadn't I don't think it would have lasted.
We would have ended up divorced and there would have been a lot more problems with the other kids.
He was getting really violent with my mom. And he was actually pushing her and shoving her up against the...
I guess all the things that had eaten at me from when he was younger, really young,
it just all came out and I just remember grabbing him, lifting him off the ground and throwing him up in a corner.
I think in placing Chris was really saying we loved him, but we also loved our other children too.
That week probably, it was like losing a child.
And somehow I had failed.
Yet he was still alive. I think it was worse than a death.
Seven years later I know that was the best decision we could have made.
He can actually hold a conversation with me or with anybody and I love him now.
I loved him then, but now it's so much easier.
Chris today is probably a better brother to Lori than I am. And they're almost friends.
She never saw the tantrums, the fighting, so she never had that vision of him.
It makes it a lot easier for her to deal with him.
Autism really isn't a big case for me.
You want to get two fish? Little dinky? OK, I'll get you five fish.
Chris not living here doesn't mean we don't love him a lot.
Because we do, he just moved away.
And the girl's so big.
I think one of the most difficult things about autism is that it rarely gets better,
no matter how hard we try.
When we deal with autistic behaviors day after day, year after year,
autism can be exhausting. Solutions are not obvious.
And all families must deal with the problems of autism in their own way.
When Greg will change from one bizarre behavior to another, he may chew his knuckles raw.
Then he may use whole bottles of hand lotion and finger paint on the mirrors.
It's a weird type of thing, and all I can say is we just don't live a normal life.
Good morning. Want to go to school? Let's get dressed.
Should we go to school? Good morning.
OK, get your sweater.
The challenge of autism is doing all the things you do for a toddler,
that you're still doing for a 23-year-old.
When Greg was about six, a social worker asked us,
well, you know Greg's going to be older soon. Where are you going to put him?
And that was very traumatic. And what I did was I walked out of counseling and never went back.
We weren't emotionally ready to let him go.
Good job. Put your other sock on.
You going to go on the bus? Going to take the bus?
Bus? To school.
To school. All right. We have to make your lunch.
My way of thinking, if we'd have given in to early age placement, I would have been giving up.
I thought that possibly he could be helped, and I wanted to be able to help him.
If Greg was handicapped, he had a crippled leg, you could pinpoint certain things.
You could teach him to be able to walk.
Greg?
It's hard to, when somebody asks me what do they accomplish at school,
it's hard to really come out and pinpoint things.
Everything he does is a very hard task.
Okay, Greg. What do you drink water from?
Shhh.
What is this?
What is this?
A cup.
What do you drink water from?
A cup.
Good.
Lisa.
At the end of the day, Greg has dropped off, and I never know when he comes in the house
if he's going to come in calm or if he's going to come in throwing a tantrum.
Living with autism is completely unusual.
You can't get a babysitter for a 22 or 23-year-old boy.
We're stuck in the house a lot.
What else? Vegetables?
Peshma.
You're kidding.
Really?
You're going to eat this?
We'll see if you use it.
It's been really hard living with a brother who has autism.
I almost resent him, but yet never to the point of where I would actually hate him
or despise him because no matter what, he's still my brother.
But a lot of times when I had things going on at school
or things that I would have liked my parents to come,
they couldn't have done that because one of them had to stand watch with Greg
or they both had to be home.
At first, when I was little, I really didn't understand.
I'd see him and he'd do these weird things with his hands and stuff
and sit there and wiggle and stuff like that.
I started looking at him and strange things.
Then when I got about six years old, my parents started telling me
that I still didn't understand until I was about nine or ten.
Autism is very isolating, but yet he has his needs.
He likes people to hug him and to show affection and to care for him.
He's just like anybody else when it comes down to that aspect of it.
What do you want?
Shampoo.
I am giving you a shampoo.
What?
Shampoo.
Okay.
I guess the answer to living with autism is to have a strong person in the family,
somebody that's kind and patient and can handle it.
That's my wife.
Without her, I couldn't have made it.
Go ahead.
Okay.
Designations.
Of course, I even resent him at times.
She doesn't, but I do.
Certain times that I do, I resent the fact that he's not normal.
I don't want to say it, but I do.
Everybody in the family tells me, well, you can't be mean to him because I take care of him.
Well, I would hope eventually that Greg would be placed into a home to give my parents some free time
and to allow them to enjoy life.
We're getting to the point that we wish that this time, this year,
that he does make it to one of the homes so that he can stay there in one of the places
because we're just getting to the point that we can't handle it now.
We've been looking for placement for about approximately five years.
We've been looking and hoping for placement, but nothing appropriate has come up.
After 23 years, we know placement's going to be best for everybody in the family.
Good. Got that one. Next one.
We love Greg very much, but it's time for Greg to get on with his life
as well as for us to get on with ours.
Autism occurs worldwide in people of all races, ethnic origins, and social backgrounds.
It happened in my family. It could happen in yours.
At least 350,000 people in the United States suffer from autism.
We've just met a few of them.
Jessica, Chris, and Greg, locked in a prison of their own.
And right now, they're sentences for life, but there is hope.
Our hope for autism lies in research.
Until we find a cure for autism, these people will remain in a world apart.